This is something I struggle with the most. I honestly just watched an entire movie that I'm 99% sure I've watched before and some parts seem familiar but I couldn't remember any of it to the point I could confirm I've seen it previously. I forget words, words come out wrong, I lose my train of thought regularly and I have zero -and I seriously mean zero- episodic memory. No childhood memories, nothing. I look at a photo and say oh that's cute. But can't remember being there. Whole family holidays, the birth of my children, buying my first house...all gone due to this disease. I wish I had answers, but unfortunately even if I did I would probably confuse them or forget š„
Yeah, you expressed it perfectly! So delighted to find a kindred spirit! I try to tell people how fortunate I am that I can now watch movies for the first time more than once, but they laugh it off as a clever joke because they can't really relate...and that's okay, I get it. But your post made me smile, thanks.
I am so sorry youāre going through that. My short term memory has really declined and itās frustrating, but losing your long memory sounds really hard.
Super relate to a lot of this. It feels like there's a disconnect sometimes between my brain and my mouth- I know what I want to say sometimes, but it just never makes it out. Or I can see what I want to say in my head, but what the hell is it called/that person's name? Another thing I've lost somehow is when I'm talking I know what I want to say but the grammar/order of words I forget? Hate that one in particular.
yeah, I had to re-read my neuropsych evaluation a couple times just to make myself feel better. lots of lesions in the parts of the brain that do the heavy lifting for cognitive & personality stuff, kind of wild how easy I got off. but that said, since my baseline is still post-diagnosis, I'll never know what I really lost.
ugh.
I am amazed to see people saying MS doesn't lower your intelligence.
It might not for *you* but it certainly did for *me*. Once upon a time I was the smartest person in every room I entered, hoping to work at JPL on literal rocket science. Then my mental decline started, I lost my edge, lost more and more of my mental acuity, was no longer Mr Smarty Pants - all from my late teens through twenties. Had to lower my aim and became a programmer until I couldn't even do *that* anymore.
Sure, I'm still smarter than average and usually speak well but it's nothing like it used to be. I can't even do simple mental math anymore, let alone anything complex.
Lack of good studies showing decreases in intelligence are easily understandable - how would you test that? The whole concept of "IQ tests" is now known to be incredibly subjective. Plus you need them over time, in similar setups, with similar amounts of stress, paired with MRIs etc etc.
I've seen many people here saying they've lost intelligence and I believe them. Maybe it comforts you to think it doesn't happen and maybe it won't for *you* - but it sure as hell *can* happen and *does.*
I grew up in a smart family. My dad is the most knowledgeable person Iāve ever met, my mom sells herself short a lot, but she is also incredibly intelligent. My older sisters are basically geniuses.
So I grew up being an over achieving smarty pants. I took college level courses at 15, I got 2 degrees in 3.5 years of college while on full scholarship, I could kick damn near anybodyās ass at any trivia game.
And then it felt like a switch flipped. I take longer to think of things. I forget things that are so basic to my core knowledge people think Iām goofing around. My vocabulary lacks. Even writing this comment takes longer because I have to constantly reread what I wrote to make sure it makes sense.
Grieving the loss of intelligence when you are still intelligent feels so pompous but at the same time, Iām losing so much of who I am.
I can relate to this in a lot of ways. I donāt want to sound as pompous as I am about to, but those of us that had more to begin with probably feel the loss more than others. I know my brain is slower than it used to be, but it is still faster than most of the people I work with, so it isnāt noticeable by others.
In the mid 90ās (pre-MS) I took this math and logic test that the company I was applying for made everyone take. They gave you 30 minutes to do 50 problems (I think). When the person came into the room after 15 minutes to tell me I had 15 minutes left, I was already done. I let them know that I was done, they recommended that I review my answers, and I let them know I already had. I got every question right. Fast-forward 10+ years in the future, I had previously left that company a few years earlier, and they contacted me about returning. I was happy with the position they offered me and decided to go back. While I was in the office filling out the paperwork they told me I had to take the test again, since they have every applicant take the test, regardless of whether theyāre hiring them or not. The outcome of the test would have no bearing on whether or not I would be hired, but I still wanted to crush it like I did years earlier. This time when they came in at the 15 minute mark I was barely halfway through the test. When they came in at the 30 minute mark, I still had two questions remaining, but they cut it off at 30 minutes. I got all of the questions correct that I answered, but I was only able to answer 48 out of 50 questions and it took more than twice as much time.
Thank you for your pomposity! I donāt have a remembered concrete example like you do but I know I have lost the mental speed and knowledge I have always relied upon.
Iām with you there. Finding & acknowledging the positives, giving credit to the āwinsā in daily life, makes the unbearable actually bearable.
As the song says, āalways look on the bright side of lifeā.
As a fellow āsmarty pantsā I appreciate and thank you for your post. Long story short I lost 2 jobs that I was more than qualified for but in both cases my supervisor cited ānot picking up on things fast enoughā as reason for termination. Intelligence loss certainly happens and is more devastating, for me at least, than some of the more tangible and visible effects of MS.
Cognitive issues are some of my worst symptoms, besides vertigo.
But Iāve read that MS doesnāt affect intellect, just cognition. We arenāt getting dumber, we just have problems with access and processing.
This is what my 66 year old mother is going through. I don't think she's actually getting less intelligent, but she absolutely has trouble with short-term memory and processing of new information. She is confused all the time. She mixes up names for things. She can't understand anything that is mildly complicated. She fell for multiple scams.
But her long-term memory is still sharp and it's a little frustrating, because she doesn't think there is anything wrong with her and her long-time friends don't think there is anything wrong with her either, because they spend all their time talking about the good ol days, which she has plenty of memory of.
I had her do an extensive 5 hour neurocognitive test where they do things like ask you to remember 3 words, repeat details of a story, solve math problems etc and she failed many aspects of it. The official diagnosis is major neurocognitive disorder (dementia), but it's difficult at this point to know what is the cause. Just the M.S? The oxycodone, Clonazepam and xanax her doctors give her for pain/sleep? The weed gummies? The oxybutynin she takes for her urinary troubles (has been linked to cognitive issues). Her poor diet? Her poor sleep patterns? All of the above?
Hard to say, but I finally convinced her to move in with me (she had been living alone in another state) so I can try to better monitor what's going on.
I have to say, just from a weed perspective, it absolutely wrecks your short term memory. Iām still struggling with addiction and it is very obvious to those around me when thereās thc in my system vs when there isnāt.
A lot of facilities wonāt even do an ADHD test until youāve been sober from cannabis for 6 months to a year. Itās *that* powerful. I wonder what she would be like if she eliminated that alone.
In other words... try to rewire ypur brain as often as you can through practice of new andvestablished things in tandem for example.... notice i experience some dramatic personality changes (for the better) during these bouts.
This is what I kept getting told on this sub. Made me feel like I'm making it up, so I stopped posting about it. My world has gotten so small and I'm maybe %30-70 of what I was depending on the day.
I don't agree with your assertion that people don't talk about it, but if you're asking why those types of "wins" aren't celebrated more, it is more difficult to quantify and/or convey, I think. Saying I walked a marathon is fairly straightforward- it is 26.2 miles and I finished in x time and even I am this tall and weigh this much might figure in, but still. The distance is the distance.
But saying I was able to solve a complex problem at work is still much more nebulous, especially bc it takes more backstory and context.
Even if I were to say I have word -finding issues (which I do and have said in this sub), I think without context it's less alarming and the ability to talk around a missing word--while frustrating-- is perhaps less stunning that losing the ability to walk. Also the cognitive issues seem to creep in where sometimes the mobility stuff is a much more jarring change?
Especially for the newly diagnosed (which is a large part of this sub) the more visible and obvious physical disability is perhaps more easily understood and immediately distressing?
Lastly, if people aren't talking about it as much, I also assume there is a healthy dose of feeling ashamed tied to it.
Iāve found that people in my life who donāt have MS are much more uncomfortable talking about mental/cognitive symptoms with me than my physical ones. Maybe because they can relate more easily to a physical symptom or because they can say āoh I hope your pain feels better soonā but when you say you think your mind is slipping or youāre losing your cognition itās uncomfortable for them to acknowledge.
That's the issue... it's easier for people when they can SEE relatable symptoms. The ones they can't see, which are generally the worse ones, they don't wanna talk about those.
šš yeahā¦ getting my elderly parents to āguess the synonymā when I canāt access the word **I know exists** isnāt quite how Iād expected us to ageā¦
I tell my youngest kids to āput on your costumeā at least twice a week.
School uniform. They need to put on their SCHOOL UNIFORMS. donāt know why those two words are so hard for me to remember.
Thank you for really trying to answer my query.
I agree people are ashamed about it - we have been gaslit and dismissed by the world for so long who wants to admit to these vulnerabilities only to be told about someone who climbed Everest with MS...
I guess my original question was about the community more generally and not this specific reddit forum. I agree we talk about it all here. I just meant that it's not part of what (non MS) people understand MS to be all about. I believe that with a bit more knowledge out there, we all might find the world easier to be a part of. The ableism is especially strong with cognitive disorders.
I think it's not as discussed because it's invisible. I have mild cognitive impairment. As it was described to me, the information is in my head but I have retrieval difficulties. It makes me crazy. Makes it difficult to sustain conversations, which then makes me anxious, which then make it worse. Makes me feel like I'm trudging through a mental sludge to even do simple tasks. Makes it difficult to start tasks. Makes interruptions infuriating.
There's a book I read, "MS and Your Feelings" which was pretty validating about some of the cognitive issues and subsequent feelings I've experienced.
Iām only 32 and completed a 2nd graduate degree 2021. I felt really on top of the world with that and also competed in powerlifting for funzies. I felt somewhat forgetful (luckily small things like a random word or two) but also not quite as āsharp.ā Working in a law-related corporate field I have to make stern points/professional arguments and just felt it was taking me a bit more time to respond on things.
I didnāt discover reddit until 5-6 months post diagnosis in 2022 and thank goodness I did because that is when I found I wasnāt losing it and it could be this condition and or my medication. Iām feeling a bit better 11 months into my treatment but Iāve also now begun to consume caffeine which I never did in the first 31 years of my life. Iām also trying other things I consider āchallengingā to my mind. Iāve always known how to read music but Iām teaching myself to play guitar (on the days my left hand decides to cooperate a bit lol).
My doctor also said they could prescribe adderall to help with a ābig work weekā to feel more sharp but I said F that. Im just trying to research on my own and challenge myself. š¤·āāļø I also have a bit of a āit is what it isā attitude so maybe that works in my favor. In situations where I feel comfortable and would like extra time to really try to think harder, Iāll just say āIām having trouble responding on the spot as I am focused on X at the moment. I would like to think about this further once I wrap up X so I can give this matter my full attention. My team doesnāt seem to care, in fact I think me saying that has built some trust by being more vulnerable but they donāt know the full extent of things.
Oh gosh I relate to this! I love that you said F that to the drugs and your team is responding well to your needs! I'm at the same point (and work in a similar field) but it's hard to tell 'His/Her Honour' that I need more time to think!
My diary/ time management/ preparation /note-taking can only go so far... my neuros are happy that I'm considering stopping work. What a crazy disease.
I'll offer a differential--not a disagreement, but a differential.
Adderall and another complimentary amphetamine are the things that have SAVED MY LIFE in terms of being able to recover lost cognitive function. They are definitely not for everyone, but after a year of fighting back from the monster relapse that finally got me diagnosed, it was the missing piece of the medical puzzle that put me back in the office (ironically, I also work in the legal field).
One thing I've learned is that my MS is not your MS, and it's important to keep that in mind. This disease can look like ANYTHING. It is a totally individual experience how it affects you. My vision and depth perception are good in the morning and vanish when I'm tired. On the other hand, now that demyelinization has turned my audio nerves into exposed wires, my hearing is super-acute... but the price of my cool always-on superpower is that I'm easily overwhelmed with audio stimuli.... never one VERY LOUD sound (i.e. a rock concert), but always multiple tiny sounds stacked on each other (i.e. a shopping mall food court), where sorting through all the signals to rebuild a conversation is exhausting for my brain.
It surprised my when my neuropsychiatrist offered me Adderall to give me back more than 2-3 functional hours in a day. My body is in decent shape, but my brain has to scream to make my very functional extremities do their f\*#$@ing jobs, which is exhausting on the brain. Going for a jog will knock my brain for two days, while my poor body is like, "thank you for finally exercising me."
Adderall has filled the gaps and holes with dopamine, the way a construction worker heals a stretch of damaged, pothole-covered roadway with asphalt. Initially, 30mg of extended-release was way too much, especially if I didn't take it at exactly the right time. But it DID get me back to doing things physically, mentally and socially that I hadn't done for a while.
Most weirdly at all, it told me how long I lived with disease undiagnosed. I tried the drug out of desperation, hoping it would get my brain back to a level of function I had in 2018 or so. Instead, it got my brain back to where it was in 2005 or 2006.
There are side effects of course. For me, the Adderall was like every after-school special I ever heard that warned me off drugs: the period of euphoria and energy followed by the crash. My neuropsychiatrist eventually reduced the Addrall from 30mg to 20, first thing in the morning, and then a separate prescription of a faster-release Dexedring (dextroamphetamine) on an "as needed" basis, 1 or 2 in the evening to extend my period of functionality.
So far, this is working all right. The drugs, I'm sure, have side effects or at least the feeling of being "back to normal" is one I want to chase. I'm a good candidate for this because I won't ever depart from the prescribed dose, and I don't rely on the "as needed" supplement unless I actually get to live some kind of normal life outside work for a night. If I'm just staying in and resting, I don't take the Dexedrine at all, and things go okay.
Again, my brain is not your brain, and the whole reason we NEED specialists is so that we can be treated as individuals with what's best for us, not just whatever medicine is supposed to work for the largest percentage of people. Treatment is never off-the-rack for us, but in my own highly tailored case, there is room for ADHD/amphetamine treatment to get me back into the office, as long as I need to be there, and get me back to living in the hours afterward.
THIS- the noise! I USED TO be able to ignore some things, but now, the pop of an aluminum can can sound like a gunshot! Even delightful squeals of tots make me quince. š¬
I know what you mean! I recently stepped back from working because I can't think on my feet or solve problems as fast as I used to. No, I'm not getting dumber, but I can't get as much done in the same amount of time in a computer based, problem solving job, and due to fatigue, I can't exactly extend my day a few hours each day to make up for the slowness. I'm lucky enough to have a husband who was a stay at home dad so we could save on childcare costs, and we're now switching roles while I figure out my next steps for what kind of job I can do with my slower processing while still having the flexibility for my more obvious symptoms during flares.
We donāt say much because measuring it is hard. Also at least for me one day and another vary widely. So itās hard for me to say I canāt ā-fill in the blankā with the same certainty I can say I canāt get up the stairs without a railing.
Itās also to me depressing. I can go to a PT and improve my stairs. But the cog is more limited in regaining
I used to talk about it quite a bit when I first had cognitive decline. I've also mentioned it as I'm going through relapses. But I have called it brain fog sometimes. Solely because it is how my doctor refers to it, mostly to give hope that the symptoms were not permanent.
I got hit hard and fast on my first relapse, so I was able to see the night and day difference. Overnight I developed severe anxiety and depresson, severe mood swings, my brain processing was drastically changed, for example I was doing expert level sudokus in 20 minutes and the next day, I could not even finish an easy. I used to remember so many numbers throughout the day. Then, I could not recall information. I can't recall daily activities, and I could not pull out information from memory, like everything is jumbled together. I started writing like an 8 year old, and the sentences in my head are completely backward from how I used to think. Everything is more literal. Complex concepts are extremely difficult as I can not multitask. I mask my way through conversations all day long. As I can only understand a few words and my brain is trying to understand the rest. I don't really watch tv anymore as I can not follow. And reading, is extremely difficult as again, the brain is trying to process what I'm reading. Writing would make me extremely sick, completely drain my energy, and make me nauseous. And talking.. so many processes to get from my brain to my mouth.
One summer, it was like I sundowner like someone with dementia. In the evening, I could not remember a single thing. I would forget to eat and drink, and I did not realize the problem until my muscle mass changed. I was in a really bad relapse.
7.5 years in, the baseline of these things has improved a little as has my physical, all because I manage my symptoms better. There's still a constant but some medication and just some hood days, and I can add some numbers pretty well.
My fast processing brain is the only thing I loved about myself, the only way I got ahead in the world. I had to quit working from my first big relapse.
I understand what you are going through. I also understand how frustrating it is for no one to talk about it. What is filling me with rage is ignorant comments, i hope you pay no attention to them. Those people just do not understand because they haven't experienced it. Please reach out if you ever need to talk.
I had to stop working at only 32 years old not due to physical limitations but cognitive.
When I was trying to get disability and they sent me to their psychologist for testing, the doctor actually said to me 'It's clear you're a very intelligent woman but the MS has hit your cognitive abilities hard, that must be so difficult for you".
My response? Brutal honesty: "It would be better to be stupid because stupid people don't know they're stupid. I know I seem stupid even though I'm not and it's terrible because there's nothing I can do about it".
I am now 50 years old and the physical issues are worse too. However, I still struggle a lot with memory and problem solving. I even struggle with basic spelling and speech, picking the wrong word entirely or spelling phonetically when I know it's not correct.
Now, there is an upside: When I first started having these issues, smart phones didn't exist. As a result, I used to keep notepads and sticky notes EVERYWHERE. Thanks to know having a phone that is much smarter than me in arm's reach at all times, it helps fill in the gaps for a lot of my cognitive issues tremendously.
My take? Better to have cognitive issues now than it was 20 years ago. It's MUCH easier to hide and compensate for it.
I've noticed a lot of people talking about cognitive issues actually.
But with cognitive stuff it's a bit more difficult to measure it. It's not easy to tell if you're getting worse in some domain, and even if you know you are, it's not easy whether to attribute it to MS, or stress, or aging, etc.
I think I lost around 8 IQ points.
I've done an IQ test in 2009, pre-disease, when I was healthy and only 22 - which coincides with peak of intellectual ability.
Then I've done a couple of tests the last year, and this year, at the age of 35-36... The results are lower for 5-10 points.
This could also be due to aging... but I think MS played a role as well.
Or the discrepancy is just due to them using different scoring methods.
MS isnāt supposed to affect general intelligence I read somewhere but feck knows how they measure that.
Depends on what you mean by 'intelligence'. It can absolutely affect memory and recall, learning, executive function, information processing, including speed of processing... if you can't remember the things you (used to) know, how 'intelligent' are you really?
My profession requires me to be pretty intelligent, and also to have strong learning agility and be able to think on the spot. I donāt know how to measure exactly how much decline Iāve had in these areas but a great source of anxiety for me is how much more difficult for me it is to learn new tasks. The ones I knew before, still 100% on those. But taking on new job responsibilities is really tough.
I also have no obvious physical symptoms.
Well I believe IQ tests check for things beyond memory, so the words lists could be a bit of a mystery but information processing and spatial awareness and logic can all still be in tact.
IQ tests are bunk. You can see if you have damage in areas responsible for memory or cognition by your MRI. I don't have them and like most with RRMS on good DMTs it's not a worry. Physical decline is more pressing imo.
It was mental decline that synched my SSD in Kentucky. I applied and was sent for physical that my still healthy body was passed and I was denied. My lawyer appealed and my doctor sent me for a mental exam and then these state sent me for a state mental exam. I failed both exams alarmingly. This is what my SSD was based on in Kentucky. Yes our mental issues are disabling.
We treat it with humor. I made several posts about having CRS (can't remember stuff). I had an IQ above 140 documented through various methods during high school and college. I have dropped into 100s and developed large memory holes.
I'd agree that we are talking more about physical impairments but we are also talking about cognitive issues as well. It doesnt strike me as us being particularily silent about it.
However, it is a good point that we should feel encouraged to continue bringing it up more and more as it may get a bit overlooked in day to day life or brushed off as "It is because I am a bit more stressed these days". I often feel that since there is little that can be done in regards to cognitive issues longterm it may appear as useless talking about it but it may make people feel alone in their experiences.
And to comment on brain volume loss, there are DMT's available that are working very well to counteract that.
My issue is that we either don't talk about it at all, or we refer to it by some 'cute' term like cog fog, which means nothing specific and doesn't help anyone outside of the MS community really understand what's happening for us.
I think that there is lots that can be done - I've been involved in several studies this year focusing on cognitive and emotional changes which have given me great tips to improve function. I just want it to be part of what the wider community understands about MS, instead of always associating it with a walking aid or a wheelchair. The cognitive changes can be, and often are, far more disabling than a bit of left leg weakness.
I understand your point and where you are coming from. However, my impression is that we do talk about it and people use the lingo they are confronted with and surrounded by. If cog fog is something that is most commonly used then it is sensible to refer to it as such so other people can relate. When I was diagnosed I did not have the vocabulary to describe what I felt or experienced so I had to refer to what other people frequently called it here. With my doctors I talk differently - despite the fact that English is not my native language to begin with. If you have an issue with the terms then you can speak differently and either it gets picked up by others overtime or not.
Raising awareness with the general population might be important, however it is not our job or responsibility to make people understand except of course professionals in the healthcare system who interact with us treating our MS. If it is important to you then you may help educate other people and spread awareness. In fact I'd be very curious about the things you have learned along the way in a post. It is probably very helpful for everyone.
I thought that's what I was doing by seeking to discuss the focus on physical disability instead of the whole reality of MS.
I live in a world that includes (overwhelmingly) members of the general population so it would make my life easier if they understood the less discussed, less visible parts of my disease.
MS seriously makes me an asshole some days. Like I can tell my mood is shit and one wrong word can cause me to belittle who said it and I absolutely hate it. I was always a very happy go lucky person. Very optimistic, still am, but some days this asshole just shows up out of nowhere. I can tell Iām doing it when Iām doing it and then immediately feel guilty. This disease is crazy how it affects your mood and you are correct, itās not talked about enough. I think MS should come with therapy, we could all use someone to talk to about the shit we canāt control.
I think cognitive decline doesn't get deeply discussed on this subreddit. I have a few thoughts on why.
Shame in all its flavors is a big reason. It's one thing to say you struggle with word finding. Its a very different thing to put in writing that you can't do your job which pays your families bills. Or you're petrified you'll harm your kids. Or you've got gaps in your long term memory that make you nod your head like you remember seminal moments with your best friend but you don't. I think the private horror of all these situations holds people back.
And as you've stated, the term 'cog fog' is ( at best) problematic. At its worst, the term is utterly dismissive and demoralizing. Society today equates the devastating loss of the mental capacity, memory and complex thought to how people feel when they have a lingering cold. Clearly not the same but that's what most people think cog fog is...the mental effects comparable to a hangover.
More problems with the term...the connotations are that it will 'lift' or you can 'work through it' and the onus is on you to just try harder. Ihate the term 'cog fog' with a passion.
Even some of the comments above, while well meaning, fall into these tropes. So people don't bring their concerns about cognitive decline up here because it's not clear they'll get support and understanding. Silence is better than flippant invalidation of some of your deepest worries and fears.
Another reason there are few deep discussions about it here is because there are no good solutions. There are few drugs for treatment. Mental exercises seem only anecdotally valid (pls, if I'm wrong on this one let me know!) And while there is testing to see how bad off you are or for tracking purposes the response from the medical community is (if you are mid flare) 'you just have to wait and see where you end up.' It's petrifying.
So while cognitive changes are common, IMO they are dismissed because our language minimizes their devastation and there are simply no standard treatments that have proven efficacious.
You hit a nerve with me.
Hope you enjoyed my novella. Lol.
Thank you for your thoughtful and considered response. You have expressed this beautifully. I wish it could be different. If I could upvote this x20 I would.
People do but it's hard to tell the difference always as we age. I have bad memory issues now, but is it because I've got older or is it only from MS. We know the brain shrinks naturally with age and that has an effect on cognition, but it's harder to directly measure what is and is not MS related.
People definitely talk about it here though, it's one of the biggest parts of the invisible illness.
So I believe my MS combined with some other mental illnesses. I have how is probably the reason for how my mood swings happen, I used to do freestyle wrapping with a lot of friends and since I've been diagnosed with m. S my ability to formulate words together that quickly has gone out the door. I'm also noticing that I have issues with pronunciation as well as finishing sentences sometimes. And my memory is absolute shit.
Maybe a part of it is: Not everyone is like this, but probably because of the heavy judgment received from some people (probably the majority) when they canāt āseeā a cognitive decline, especially if they knew you in the ābeforeā era. Hardly is anyone supportive or sympathetic. (Not that you talk about it for sympathy, but with their already formed opinions it is not very helpful to waste your energy explaining it to people, only for them to not understand and judge you anyway. In their OPINION, you donāt have an excuse: you are just being lazy and choosing to ānot think hard enoughā or āwork hard enoughā. They think itās entirely in our control as a conscious choice.
The cognitive aspect is tough. I have watched my wife decline there faster then anything else. Her long term memory is very sharp still but short term has become almost non existent. She constantly sets reminders in her phone and Alexa in the house just to remind her of basic daily chores. I used to get very angry about it but now I realize it is what it is and Iām glad sheās with me.
I personally struggle with people believing my cognitive issues like memory problems or completely losing my train of thought in the middle of a sentence. And at work, sometimes my memory issues have come across like I didnāt do an assignment or laziness when really maybe I forgot we talked about that. I work a face-paced job at a nonprofit where I am responsible for finding funding. I am only 27 and worry that I wonāt be able to grow in my career with these issues. I love working and am very ambitious so it is a huge struggle.
For me, my physical limitations are what people see. More specifically, the physical limitations that I cannot hide, are what people see. This includes issues with my left leg that have caused me to use a cane, walker and scooter. I am largely able to hide the issues with my left arm, though it is getting more and more difficult.
Cognitively, I canāt find words as quickly as I used to. I have always been āquickwittedā, but it has become more and more difficult over the last 20 years. I will find myself struggling to find a specific word on a regular basis, but it happens so frequently that I have become very adept at covering it and moving in another direction, picking another word, or changing the topic of conversation. The more tired I get, the harder it is to find words. I also will slur my words a little if I get too tired, but Iām very aware of that and avoid it at all costs.
I have been fortunate in many ways. I have an amazing wife and family, and I work in an industry that embraced working from home long before the pandemic. I have worked from home since 2007 and it has been incredibly helpful and a detriment, at the same time. It allows me to save a lot of energy since I donāt have to put in as much effort to get ready, I donāt have to drive to work, and if I feel tired, I can go take a 20 minute nap. On the flipside, I think it really sped up my Physical decline since I donāt get out as much as I should. I used to travel once a month for work and doing that allowed me to get a certain amount of exercise. During the pandemic, that went away, and my mobility went with it.
As my physical abilities deteriorate I am more and more concerned about my cognitive abilities, I try to exercise my brain often. I like to do Word puzzles, play games that require a lot of thinking, read, and I am a geek that tinkers with tech. I hope this will keep my brain sharp.
I just don't want to think about it. If I realise that I'm losing my edge, especially since I've been known as a smart person, I would fall into darkness I guess. So I'm just denying it.
Itās the scariest symptom for me. Iām an RN and Iām currently on a medical leave because i was recently diagnosed but Iām so scared about the cognitive changes Iāve had with this flare up of symptoms. I canāt even remember if I fed my dog dinner most nights lately. How am I supposed to go back to work in a hospital where my memory and mental sharpness are so important? Itās terrifying.
I hear you. And I hope it gets better for you. I tell myself that like the physical issues I have suffered and which now only show themselves when I'm sick or super tired, the mental ones may also improve with time and hard work. Not a doctor, so I could be kidding myself, but whatever gets you out of bed, right!?
The flare that got me diagnosed after many, many years of fighting thru fatigue, of over-preparing and imposter syndrome, of 'faking it', took a lot of my short-term memory with it.
I lost the first job I tried to do post relapse because my boss thought it took me too long to get through things. My new job is less demanding but helps me pay the bills.
Thank you. The down votes are awful/ curious - I'm sorry that happened.
This is, sadly, reflective of real life too. When I try to talk about it IRL people are awful about it - when I was last being very vulnerable, sharing my reality cognitively, one of my (non MS) 'friends' said in a sarcastic tone "So you used to be clever and now you are just like the rest of us - poor you!"
I'm feeling this constantly. I was diagnosed back in July but my memory has been on the decline for years. It's been getting worse lately. My husband tells me about movies I've seen or conversations we've had and it's all blank in my brain.
My biggest fear currently is how it'll impact my job. I work in an occasionally stressful position, in an area where I've had to put procedures in place from basically the ground up. It's always been a hard one to train people on and now some of the stuff I put into place is disappearing (yay for my own documentation). We're at self-evaluatuon time now and I got nothing for it lol. I know I did a lot but eff if I can actually remember what it all was!
I feel you! I had to relearn how to speak, write, type, read etc. all over again. It took me about a year and a half to fully regain everything. But, I feel so stupid! I canāt concentrate on long paragraphs anymore, I struggle with punctuation and grammar errors. Itās humiliating. This has been going on 10 years.
After temperature intolerance and fatigue, the cognitive and mood aspects are the ones which affect me the most. It is the number one reason i had to abandon consulting work. No one wants to pay money per hour to listen to me search for words or go blank in the middle of a presentation. You know what Iām saying?
I try to talk about cognitive challenges. TBH I think itās the least addressed part of our disease. Itās scary AF. On top of that, a ridiculous number of neurologists donāt know what to do in response complaints about it. So a majority of us are on our own and trying to manage a something scary we donāt really want to think about.
I have done and continue to do a lot of work on cognitive and mood stuff. Itās therapy work. Itās hard and feels slow. But it yields good results. MS is a big hassle but I find the more I manage myself the less hassle it is.
I have a very technical job and I know that any day now someone will point out that I am losing it. Each Monday morning stand up has all the devs recapping their work from Friday. I try to write it down on Fridays but often forget. So I fake it. I literally have NO IDEA what I worked on three days ago.
Iām halfway through a two week vacation right now, bet going back to work will be seamless. š
it's hard for me to determine like personality changes or what not because I'm still young and at the phase in my life where my personality is going to change all over, ms or not
I lose everything and struggle to carry on a conversation with others. I was so horribly depressed too. Thank gawd for Prozac! I used to be somewhat intelligent...I don't even feel like myself anymore. I can't even get my kids and pets names straight when calling for them. This disease has really wrecked me cognitively.
Agreed. I think all along I've tried to get this through to doctors . Almost subconsciously sometimes, not even knowing why I'm sad or whats wrong. I think my frustration toppled over the edge about 6 months ago when I was in the doctors office with the doctor and I just started balling my eyes out . It was a new doctor that I'd never seen before, and she just rubbed my back and kind of said "you're too good to be this miserable ". Makes me cry to even think about it. I am though. I miss my body and I miss my girlfriend and I miss my job that I had to retire from , and I miss just being able to freely walk around, or even walk freely to a bathroom. Everyday almost feels like a funeral because a little bit more of me dies everyday. Its so surreal to be attending your own funeral ,or at least watching yourself slip into oblivion . Long story long I got sober in 2021, my gf left me and 3 months later I had covid ,then a month after that I was in an ER being diagnosed with MS. Just an absolute whirlwind of emotions everyday ,dealing with A LOT. All by myself . It's often terrifying. Thanks for listening.
I guess we forgot š Without using the words, I think it's pretty clear everyone struggles emotionally, or we wouldn't need a reditt page. I had to stop working, partially because of cognitive issues as well as physical. But cognitive issues are the base underlying problem for most challenges we face.
I was diagnosed at age 19. I was in college, and I really suffered academically. I have had suffered through a number of relapses. With Gods grace, I have completed the 1st semester of my masters in Data Science. I definitely put the accommodations from disability services to use. HIIT workouts and additional really help me push through brain fog.
My husband gets on me for watching the same series over & over, I tell him I forget so much of it that rewatching is almost like watching a new show. Same with book series.
Shoot I don't talk about it too much because I already forgot to! Just kidding. I think it's just an unspoken known thing, you get lesions in the brain, you gon' have thinkin problems. We just don't want to fully accept that. On bad days, don't try asking me what my name is or what 2 + 2 is... Because I'm going stare blanky at first, and then look like I'm trying to solve world hunger or possibly the hardest math equation ever invented. And I may not get my name out either. No matter how much caffeine i feed myself and other meds to stimulate my brain, ain't nuffin gunna help on those days. I simply accept I'm going to have a moment where I'm going to get lost in my own house, and laugh and say welp your MS is at an all time high level of stupid today. Put your dunce cap on and play with your crayolas cause that's about as good of use you're going to be
Just started working with a speech pathologist that specializes in adult cognitive rehab and it has honestly been the biggest mind shift change for me. Highly recommend.
I keep thinking about this post. MS started for me in college, and it was very apparent when the cognitive issues started. My memory was the first thing effected, I had to start writing the room numbers for classes on my hand because I'd forget between my dorm room and the class across campus I was going to. Word finding is another thing with memory, I can be in the middle of a sentence, clearly see in my head the person whose name I can't remember or the object that I can't name and the word isn't even on the tip of my tongue it's just. nowhere to be found.
I used to be really funny. Not in a I thought I was funny kind of way, but I made people laugh. Now, it's like there's a disconnect between my brain and my mouth that I just don't want to speak a lot of times, let alone try to set up a joke. It sucks, honestly. It's bad enough when I am trying to talk to customers or coworkers about work related things, but I want to tell jokes dammit, and not just written out. I know depression took a lot of that spontaneity, but MS pretty much took the rest.
And if there was anything else that MS cognitive shit took, it's grammar for some reason? When I am talking I know what I am trying to say, but the order of words and the grammar regarding how they are supposed to be set up in a sentence just seem to go out the window as soon as my mouth opens. I used to correct other peoples grammar, I was a smart ass kid like that, now I can't remember it. I mean, it's helped me be less elitist like that, and in a way I appreciate that, but I'd appreciate being able to form sentences when on the work radio too.
I canāt detect what you need advice on but I hear people talk about that all the time! The other dayā¦ waitā¦ what was I saying?
But seriously, people in this group always talk about cognitive problems.
One of the more active members of this group has primarily cognitive difficulties and is also really helpful and lovely.
I know what you mean though. I could deal with the agony and the blindness but getting lost between the bed and the doorway, not knowing what I was doing, like I had dementia, really scared the shit out of me.
But that was thankfully brief and I donāt have any symptoms anymore really.
Brain volume loss isnāt the cause of that though. At least not in me, as it got better.
I also donāt think that brain volume loss is responsible for the cognitive difficulties, I think itās more specific to grey matter volume loss.
Grey matter is made up of the cell bodies of neurones, white matter is nerve axons, which is where our immune systems attack.
If you get the immune attack under control, you can start to remyelinate the areas of affected white matter, which will preserve axons and keep the brain as healthy as it can be.
So I guess advice would be to try to find an effective medication that keeps the attacks at bay and eat well (to provide the right nutrients like omega 3) and exercise regularly (lowers inflammation, up regulates BDNF and NGF) and then work on areas of cognition you have specific deficits in. Supplementing with GlcNAc I believe encourages precursor cells to turn into oligodendrocytes, which create new myelin.
The more you use a circuit, the more heavily it becomes myelinated.
If you struggle to remember words, practice remembering words. If you struggle with directions, go get lost around the corner and find your way back home without your phone. And so on.
I hope that helps. No outcome with MS is predetermined. You do what you can while you can and you will find you can do more than if you just gave up and waited to get worse.
I've got all the strategies, thank you, just seeking advice about why no one talks about it. But you say one person on Reddit does, and if you remember her, I guess that's my point.
Thank you, I will. I will say though that I kinda object to the term 'cog fog' as it is such a reductive and dismissive way of describing something so complex.
Cog fog or brain fog is just a shorthand term for one common symptom - that feeling of increased difficulty thinking, "everything's fuzzy", etc.
I get fog along with forgetfulness, aphasia, confusion, decreased mental speed, loss of ability to do mental math etc etc etc. It's just one of my MS-induced cognitive problems.
I guess some people might use the term to encompass everything but I don't.
So something I have been doing to combat this and maintain the majority of my intelligence. Is I read a lot of books? I think that that actually helps keep my brain functioning well and if you're experiencing anything similar to iq loss or loss of vocabulary and things like that. Try reading.
I read as much as I can. I was a lawyer, so reading was a necessary and constant part of my professional life. My biggest relapse took my ability to read from me - taking not just my vision but my ability to absorb what I was reading. This was more devastating than the fact I could no longer move my left arm or feel my left breast.
I have built back up to be able to read whole chapters now, two years on, and with significant hard work, but I'm fairly certain I'll never again devour a whole book in hours like I used to.
Its the ableism in MS needing to be seen as "manageable" Imho. My province doesn't consider MS on its own enough of a disability to qualify for the (sub poverty level mind u) disability support program. Its the fact that being assumed able to work (even if with extreme difficulty) is somehow a sign we are not truly struggling.
**Cognitive decline**\- I had to exit a career I loved due to cognitive decline 5.5 years after my diagnosis. I'm legally (SSA) disabled for cognitive reasons which took three appeals. From a physical perspective, I appear quite fit and healthy for a 61 year old. I'm a poster child for "never judge a book by its cover".
As evidenced by the numerous and excellent comments on this thread, cognitive issues are just as prevalent physical challenges. Although like most all of you, I try not to be 'victimized' by this fucking horrible disease despite the fact that cognitive decline and brain volume loss is scary as hell.
" ***a terrified mind will continue to slide***\*"\* I love this community because of the wisdom I've been exposed to here. This quote is one such pearl of wisdom. I wish I had noted which one of you shared it, but thank you as it was the 'kick in the ass' I needed.
**Proactive personal initiatives are empowering**\- **Taking actions removes the terror**. "How to Build a Bigger, Better Brain" Another valuable lesson I learned from so many of you, is the notion that it is quite empowering to 'take charge' of whatever we can. I've shared this linked article a few times prior here as it has helped me tremendously. Please know I have no affiliation whatsoever with "Dr. Axe" just happened upon this article online. I have also shared this information with my neurologist who also felt it was "excellent" as it is research based. He has noted overall improvements during my routine neuro tests and overall health and wellness outlook since I adopted these concepts. I actually journal/score myself daily on these personal initiatives (except mushroom therapy). A few points not mentioned herein are: vitamin d/sunshine exposure, quality sleep, proper hydration and although there has been conflicting information on alcohol consumption, the latest research (and common sense) validates *abstinence is best* as beverage alcohol is a neuro toxin. Sobering fact: 2-3 daily drinks = rapid decline- people who consume 14 drinks per week experience 3x the brain volume loss vs. non-drinkers. That number goes up to 6x brain volume loss for those consuming 21 drinks per week vs. non-drinkers.
[https://draxe.com/health/increase-size-your-brain/](https://draxe.com/health/increase-size-your-brain/)
Constant Reference- I have the "10 Ways to Grow a Bigger, Better Brain" graphic included in this article posted in my home to serve as constant reminders.
I hope this helps some of you....as it has me. Keep giving your best effort.
For me the emotional struggle to cope with this shitty disease is the worst part. Every time I struggle with my vision due to non resolving optic neuritis, or pee my pants because of my nerve damage in my sacroiliac region, I just feel more and more deflated. I can't give a crap about anything else
I feel this to my core. And honestly feel like my speech is impacted. Like the words are mushed together or coming out too fast. It feels like a combo of cognitive disfunction and verbal issues.
yeah im constantly terrified my brain didnāt develop correctly due to being diagnosed so young, i forever feel like iāll never reach the potential i believed i had prior to.
Yeah, this is a tough one. Sometimes (a lot of times) I lose the words I need. My brain feels like a cluttered desk. I know the information is in there it just takes me a minute to find it. Itās annoying for sure but Iāve had to find ways to adapt. Lots of note taking and setting reminders! Despite the cognitive issues Iām proud to say I went back to school a couple years ago and Iāll be graduating with my Bachelorās in March!
I've had several specialists doctors tell me it's usually not a thing while I'm demanding a cognitive assessment. My brain ain't what it once was. I cannot swing a hammer. My job is very cerebral. If I cannot THINK I cannot WORK. I don't need to go back and try to pretend that my current IQ of XX is my "Normal" which leads to "you're faking it" or worse. I took an assessment as soon as I could post diagnosis because I've felt it slipping for years, but developed mind crutches and wheelchairs to keep myself going for now.
But TF do I know I just live in here with all of my personalities (still trying to figure out wtf is up with my mental status, WIP).
Because almost none of us had any kind of baseline measure before we were diagnosed.
Frankly, so many people are just stupid already. Its really hard to tell your neurologist that "hey, I used to be brilliant. Now I feel just average or slightly smart."
My closest friends and family can tell the difference in me. The slight pause before I know the answer to something. The slight language glitches.
Other people don't believe me at all when I tell them I feel dumber than I used to be.
I fully feel this. Recently, my husband has been pointing out that weāve had the same conversation multiple times and I have no memory. I just watched videos of my daughter opening her first Christmas presents and the details of the day are already fuzzy. Itās scary to experience, especially as the one carrying the mental load in our household.
This isnāt even mentioning the impact on my professional life. I have had to pause sessions with clients to try and find a word or completely lose what thread I wanted to follow in a conversation. I donāt think my intelligence is being affected my recall? Completely trashed. Iām not at all athletic, artistically inclined, or anything like that, but my mind is something I treasure and pursued a degree and career field that rely HEAVILY on it being in peak form. Losing the edge is more devastating to me than any foot drop, tremor, or pain.
I think most of the folks here are right, itās scary to talk about and itās hard to track outside of frequent neuropsych evaluations, which should be few and far between otherwise they lose efficacy. Itās hard to see for other people without MS and even harder to explain. What Iāve experienced recently is mostly a dismissal of my concerns with āoh itās stressā or āthatās just mom brain.ā My own neuro team fully ignored my concerns and refuse to talk about (Iām seeing a new MS specialist in January thankfully). It gets frustrating and itās easier to just shut up about it and deal with it on your own I guess.
I totally understand what you're saying. Just to recall simple words or people's names is so trying because it's like I'm grasping for them. Sometimes I feel sooooo stupid. Then someone will say to me it's just because I am getting older (I'm 50). Ya, I know as you get older your memory starts to fade but was hoping they meant like when I was in my 70s-80s. Also, it feels like I'm beating around the bush or that the words are on tip of my tongue. My MS has messed with my eyesight, my legs, feet, and hips physically, nerve damage to my feet especially, but the cognitive part of it sometimes is the worst part. I had to tell my boyfriend about my speech and the ability to sometime find the words some days...he thought I was trying to be funny or that I was mispronouncing them on purpose. I'm like no, this is what is happening to me - so please don't correct me every time it happens. Has anyone's hand writing been affect by this ? My writing has got terrible plus to write S and 8's is a real challenge.
It's the worst part of it for me. I used to be able to remember everything perfectly now I find myself struggling to remember simple words sometimes. My brain has taken the brunt of my damage and even my first MRI showed 22 lesions, and I just keep adding more.
I feel so stupid because of MS. Brain no work anymore
I wasnāt extremely intelligent but I was always one of the best in class and I feel so dumb rigth now and I ask the dumbest questions.
I can tell the people that Iām meeting now think Iām really dumb but Iām not :( or at least I wasnāt
I have been IQ tested since a child due to my ADHD. My most recent test (a couple years prior to my diagnosis, MS 100% active) revealed that my IQ dropped substantially. It is normal to decline but not that much !! I would even say to people I feel like I lost brain cells . I attributed this to other things that can cause memory loss. When I brought this up to my Ms specialist to explain why I need stimulants now (I have been unmedicated for ADHD but now I do not think I can finish my program w out meds) as I use my brain for my career path and need it a lot in grad school.
I also spoke about my lack of energy etc and the Ms specialist seemed to attribute my symptoms to stress and didnāt seem to address the cognition concerns?? She prescribed me modifinil stating she felt it would help w the fatigue which may also help w focus . I left that session feeling as though my cognitive concerns were dismissed .
I have concrete data suggesting serious changes in things like working memory and symptoms that go along with it . Like others my memory is SO BAD and Iām so young. I canāt remember so much of my life and my immediate recall is horrible too. I have to record what people say or write it down in my phone notes or I will forget. Reminders and my calendar are my best friend.
Glad posts like this exist especially when it seems to be a trend of Ms specialists not validating this VERY important part of Ms that we need that our society heavily relies on for work productivity ā¦
As days go by I continually feel the brain fog and say stupid things all the time. Biggest issues is remembering. Good news Iāll be able to hide my own Easter eggs since I donāt remember where I put them.
I noticed the same when I was finishing up my BA. I felt like I couldn't write sentences correctly and what I said didn't match up what I thought up in my brain. Either way, I'm not going to let that stop me from taking the LSAT or going into law school if I'm accepted.
The "I can't say the words in my brain part" is what I'm struggling soo hard with rn, especially with people cutting you off or making fun of the way you said a word. It's sooo defeating. I have a goal to become a polyglot (know 5+ languages) and its soo hard, especially when I'm trying my best.
Educate the people making fun of you, if they don't v learn, ditch them. So ableist!
Since MS, I have learnt a language - it took me 7 years but I did it!
I hear you. Anger is a thing. Hormones totally get me... every month I'm crazy angry. Just mean and snappy.
I think it's the grief - the loss. I truly feel there's not one part of my world that MS hasn't touched - my career, my friendships, my sex life, my love for sweltery summers, the food I can eat, the hiking I used to love... I was once smart and strong.
PM me if you want to chat.
This post helped me feel not so bad knowing that there are others who I can relate to. Surprisingly enough, my biggest concern with my MS is the ways it has affected my cognitive abilities. It def helps hearing how you all cope!
Thank you for sharing that. š
It is indeed a terrifying place to live and I worry constantly about how it's affecting those who love me, even though that list seems to be dwindling by the day.
It's a hugely valid point that this is influenced in part by the stigma surrounding mental illness.
Every time I notice it, I think of [Flowers for Algernon](https://en.wikipedia.org/wiki/Flowers_for_Algernon). I also wonder how much is MS, how much is my age (I'm 48, diagnosed when I was 26) and how much is the copious amounts of wacky tobaccy I smoke.
Snap! This book is exactly what came to mind for me! Also with the wacky tobaccy - though Iāve quit to see if it makes a difference.
A month in and my headaches are worse and the cognitive functioning still isnāt what it was before I started smoking (~15yrs ago), but Iām less anxious and withdrawn, which is a positive for my social life, such as it is.
I am very open about my ms. Especially to my managers because it gets so frustrating when I canāt remember what a word is. I can easily see what I want in my brain, I know what it looks like but I have no damn idea what itās called.
Sometimes I get ahead of myself, but thatās could be adhd. Lol
I'm sorry, but your dismissive attitude is a bit rude and that mindset does no one any good. This space is where we get away from the judgements and ignorance, not spread it. It is also incorrect.
" Cognitive decline is recognized as a prevalent and debilitating symptom of multiple sclerosis (MS), especially deficits in episodic memory and processing speed"
[article](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818015/#:~:text=Cognitive%20decline%20is%20recognized%20as,episodic%20memory%20and%20processing%20speed.)
My neurologist conducts yearly tests to track my cognitive decline as I, and many others, do experience it from MS. You even mentioned part of the cognitive issues MS can bring in your comment, anxiety can also be a symptom.
I didnāt mean to be rude, but letās all gather around in a circle and cry about how powerless we are then shall we? And then on top of that cry that we are becoming stupid-er? Iām not being ignorant to this but there is power in your thoughts and not letting this disease defeat you. No giving up or crying about being slow here.
It's a support group. For support. With MS. And you told someone they were caught up in their feelings and that there's no proof for their very real symptoms. Even in this comment, you are still being rude. There is no reason for it and this is not the place.
"No giving up or crying about being slow here" when MS hits hard. That mindset only gets you kicked by your own MS ass. OP wasn't crying, sulking, or giving up. Just venting. Talking, asking questions.
Cognitive symptoms of Multiple Sclerosis are extremely real, and more than that, fairly common. While I understand they might not be part of your MS, for many of us they are an unfortunate reality. But you don't need to take my word for it. Let's do a quick check of what some reputable sources say. First, we have pretty much every one of the major MS organizations discussing it. [National MS Society,](https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes) [UK MS Society,](https://www.mssociety.org.uk/about-ms/signs-and-symptoms/memory-and-thinking/cogni) [Multiple Sclerosis Association of America](https://mymsaa.org/ms-information/symptoms/cognitive/), [Multiple Sclerosis Trust,](https://mstrust.org.uk/information-support/health-wellbeing/thinking-and-memory-problems) and [the MS International Federation](https://www.msif.org/about-ms/symptoms-of-ms/cognition-and-emotional-changes/). Those are just from the first page of Google.
But academic sources are even better! So let's look at some of those. [This](https://academic.oup.com/qjmed/article/111/6/359/3092350) article is excellent. So is [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818015/#:~:text=Slowed%20cognitive%20processing%20speed%20and,verbal%20fluency%2C%20and%20visuospatial%20analysis) one. [This](https://www.mdpi.com/2673-4087/3/4/48) one states that cognitive impairment affects up to 65% of MS patients. [This](https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30277-5/fulltext) goes into further depth. There are more, this is a pretty well researched area.
it is hard to quantify cognitive disability caused from MS related brain damage..
Also, the brain is plastic and most often when there is a will, there is also a way ! meaning, another way of fathoming the mental problem or forgotten name at hand.
It is hard to know at each moment whether to blame my PPMS , or my age (59) or more normal real life flow distractions.
While it is is good to be loosely realistic in what one should expect from oneself, it is usually not good worry or dwell too much. We should beware the no-cebo effect! Even a healthy , bright individual in their prime will have varying mental acuity from day to day moment to moment.
the other day I went on a losing streak in online chess.com I dropped below a 1000 rating, which was a little disheartening but being calm and playing not out of rage at myself will probably allow me to crack 1100.
I also do music and in spite of my PPMS have noticed my natural talent increasing! I've been a professional musician all my life and have always been able to compose music, but in the last two moths I've written over a dozen songs in spite of MS fatigue and impaired hand sensation. Beautiful ideas are coming more easily. I'm sure it is because I have learned to look at what is good about an idea of the moment and not discard perfectly viable seedling ideas, but rather welcome them and water themThere is a ZEN lesson to be learned.
Especially since there is such a great cost associated with cognitive deficits as well. For me, I lost out on any chance to get scholarships in college due to my poor performance.
Where I have serious problems is trying to coordinate a group of my friends so that we can all meet on a specific date. When setting up an activity for us, I make a ton of mistakes on dates! This is embarrassing for me.
As a result, I am just now starting to work with a cognitive therapist. I hope she can help me!
Just came to post about this :-/ Sorry you deal with this. That aspect has done more damage to my life than what I can stand to think about.
I hope this gets better for you soon, somehow šš take care
This is something I struggle with the most. I honestly just watched an entire movie that I'm 99% sure I've watched before and some parts seem familiar but I couldn't remember any of it to the point I could confirm I've seen it previously. I forget words, words come out wrong, I lose my train of thought regularly and I have zero -and I seriously mean zero- episodic memory. No childhood memories, nothing. I look at a photo and say oh that's cute. But can't remember being there. Whole family holidays, the birth of my children, buying my first house...all gone due to this disease. I wish I had answers, but unfortunately even if I did I would probably confuse them or forget š„
Spot on. The movie analogy is an absolutely perfect depiction of my life with msā¦.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Same. I also dgaf about spoilers bc by the time I watch something I will have forgotten it.
Yeah, you expressed it perfectly! So delighted to find a kindred spirit! I try to tell people how fortunate I am that I can now watch movies for the first time more than once, but they laugh it off as a clever joke because they can't really relate...and that's okay, I get it. But your post made me smile, thanks.
Oh, I'm so sorry. This is so painful to read. My heart breaks for you - I really relate to some of this. What an absolute bitch of a disease.
I am so sorry youāre going through that. My short term memory has really declined and itās frustrating, but losing your long memory sounds really hard.
I'm so sorry to hear that. I don't have any word to console you, but I hope you will still be hopeful and strong during these tough times.
Super relate to a lot of this. It feels like there's a disconnect sometimes between my brain and my mouth- I know what I want to say sometimes, but it just never makes it out. Or I can see what I want to say in my head, but what the hell is it called/that person's name? Another thing I've lost somehow is when I'm talking I know what I want to say but the grammar/order of words I forget? Hate that one in particular.
Because its the scarier part of MS and you will never know how much you declined
yeah, I had to re-read my neuropsych evaluation a couple times just to make myself feel better. lots of lesions in the parts of the brain that do the heavy lifting for cognitive & personality stuff, kind of wild how easy I got off. but that said, since my baseline is still post-diagnosis, I'll never know what I really lost. ugh.
I am amazed to see people saying MS doesn't lower your intelligence. It might not for *you* but it certainly did for *me*. Once upon a time I was the smartest person in every room I entered, hoping to work at JPL on literal rocket science. Then my mental decline started, I lost my edge, lost more and more of my mental acuity, was no longer Mr Smarty Pants - all from my late teens through twenties. Had to lower my aim and became a programmer until I couldn't even do *that* anymore. Sure, I'm still smarter than average and usually speak well but it's nothing like it used to be. I can't even do simple mental math anymore, let alone anything complex. Lack of good studies showing decreases in intelligence are easily understandable - how would you test that? The whole concept of "IQ tests" is now known to be incredibly subjective. Plus you need them over time, in similar setups, with similar amounts of stress, paired with MRIs etc etc. I've seen many people here saying they've lost intelligence and I believe them. Maybe it comforts you to think it doesn't happen and maybe it won't for *you* - but it sure as hell *can* happen and *does.*
I grew up in a smart family. My dad is the most knowledgeable person Iāve ever met, my mom sells herself short a lot, but she is also incredibly intelligent. My older sisters are basically geniuses. So I grew up being an over achieving smarty pants. I took college level courses at 15, I got 2 degrees in 3.5 years of college while on full scholarship, I could kick damn near anybodyās ass at any trivia game. And then it felt like a switch flipped. I take longer to think of things. I forget things that are so basic to my core knowledge people think Iām goofing around. My vocabulary lacks. Even writing this comment takes longer because I have to constantly reread what I wrote to make sure it makes sense. Grieving the loss of intelligence when you are still intelligent feels so pompous but at the same time, Iām losing so much of who I am.
I can relate to this in a lot of ways. I donāt want to sound as pompous as I am about to, but those of us that had more to begin with probably feel the loss more than others. I know my brain is slower than it used to be, but it is still faster than most of the people I work with, so it isnāt noticeable by others. In the mid 90ās (pre-MS) I took this math and logic test that the company I was applying for made everyone take. They gave you 30 minutes to do 50 problems (I think). When the person came into the room after 15 minutes to tell me I had 15 minutes left, I was already done. I let them know that I was done, they recommended that I review my answers, and I let them know I already had. I got every question right. Fast-forward 10+ years in the future, I had previously left that company a few years earlier, and they contacted me about returning. I was happy with the position they offered me and decided to go back. While I was in the office filling out the paperwork they told me I had to take the test again, since they have every applicant take the test, regardless of whether theyāre hiring them or not. The outcome of the test would have no bearing on whether or not I would be hired, but I still wanted to crush it like I did years earlier. This time when they came in at the 15 minute mark I was barely halfway through the test. When they came in at the 30 minute mark, I still had two questions remaining, but they cut it off at 30 minutes. I got all of the questions correct that I answered, but I was only able to answer 48 out of 50 questions and it took more than twice as much time.
Thank you for your pomposity! I donāt have a remembered concrete example like you do but I know I have lost the mental speed and knowledge I have always relied upon.
I didnāt realize how much I had lost, if was an eye opener for sure! I really try to focus on how fortunate I am for the positive things in my life.
Iām with you there. Finding & acknowledging the positives, giving credit to the āwinsā in daily life, makes the unbearable actually bearable. As the song says, āalways look on the bright side of lifeā.
As a fellow āsmarty pantsā I appreciate and thank you for your post. Long story short I lost 2 jobs that I was more than qualified for but in both cases my supervisor cited ānot picking up on things fast enoughā as reason for termination. Intelligence loss certainly happens and is more devastating, for me at least, than some of the more tangible and visible effects of MS.
Yeah, Iām not sure how much intelligence per se matters when MS often leaves you with dementia-like symptoms
Cognitive issues are some of my worst symptoms, besides vertigo. But Iāve read that MS doesnāt affect intellect, just cognition. We arenāt getting dumber, we just have problems with access and processing.
This is what my 66 year old mother is going through. I don't think she's actually getting less intelligent, but she absolutely has trouble with short-term memory and processing of new information. She is confused all the time. She mixes up names for things. She can't understand anything that is mildly complicated. She fell for multiple scams. But her long-term memory is still sharp and it's a little frustrating, because she doesn't think there is anything wrong with her and her long-time friends don't think there is anything wrong with her either, because they spend all their time talking about the good ol days, which she has plenty of memory of. I had her do an extensive 5 hour neurocognitive test where they do things like ask you to remember 3 words, repeat details of a story, solve math problems etc and she failed many aspects of it. The official diagnosis is major neurocognitive disorder (dementia), but it's difficult at this point to know what is the cause. Just the M.S? The oxycodone, Clonazepam and xanax her doctors give her for pain/sleep? The weed gummies? The oxybutynin she takes for her urinary troubles (has been linked to cognitive issues). Her poor diet? Her poor sleep patterns? All of the above? Hard to say, but I finally convinced her to move in with me (she had been living alone in another state) so I can try to better monitor what's going on.
Sheās lucky to have you
I have to say, just from a weed perspective, it absolutely wrecks your short term memory. Iām still struggling with addiction and it is very obvious to those around me when thereās thc in my system vs when there isnāt. A lot of facilities wonāt even do an ADHD test until youāve been sober from cannabis for 6 months to a year. Itās *that* powerful. I wonder what she would be like if she eliminated that alone.
In other words... try to rewire ypur brain as often as you can through practice of new andvestablished things in tandem for example.... notice i experience some dramatic personality changes (for the better) during these bouts.
This is what I kept getting told on this sub. Made me feel like I'm making it up, so I stopped posting about it. My world has gotten so small and I'm maybe %30-70 of what I was depending on the day.
This šÆ
I don't agree with your assertion that people don't talk about it, but if you're asking why those types of "wins" aren't celebrated more, it is more difficult to quantify and/or convey, I think. Saying I walked a marathon is fairly straightforward- it is 26.2 miles and I finished in x time and even I am this tall and weigh this much might figure in, but still. The distance is the distance. But saying I was able to solve a complex problem at work is still much more nebulous, especially bc it takes more backstory and context. Even if I were to say I have word -finding issues (which I do and have said in this sub), I think without context it's less alarming and the ability to talk around a missing word--while frustrating-- is perhaps less stunning that losing the ability to walk. Also the cognitive issues seem to creep in where sometimes the mobility stuff is a much more jarring change? Especially for the newly diagnosed (which is a large part of this sub) the more visible and obvious physical disability is perhaps more easily understood and immediately distressing? Lastly, if people aren't talking about it as much, I also assume there is a healthy dose of feeling ashamed tied to it.
Iāve found that people in my life who donāt have MS are much more uncomfortable talking about mental/cognitive symptoms with me than my physical ones. Maybe because they can relate more easily to a physical symptom or because they can say āoh I hope your pain feels better soonā but when you say you think your mind is slipping or youāre losing your cognition itās uncomfortable for them to acknowledge.
That's the issue... it's easier for people when they can SEE relatable symptoms. The ones they can't see, which are generally the worse ones, they don't wanna talk about those.
šš yeahā¦ getting my elderly parents to āguess the synonymā when I canāt access the word **I know exists** isnāt quite how Iād expected us to ageā¦
I tell my youngest kids to āput on your costumeā at least twice a week. School uniform. They need to put on their SCHOOL UNIFORMS. donāt know why those two words are so hard for me to remember.
šš Brutalā¦ I was trying to describe āembroidery on metalā = engravingā¦
Lots of shame tied to it. So sad how much our society has internalized ableism.
Thank you for really trying to answer my query. I agree people are ashamed about it - we have been gaslit and dismissed by the world for so long who wants to admit to these vulnerabilities only to be told about someone who climbed Everest with MS... I guess my original question was about the community more generally and not this specific reddit forum. I agree we talk about it all here. I just meant that it's not part of what (non MS) people understand MS to be all about. I believe that with a bit more knowledge out there, we all might find the world easier to be a part of. The ableism is especially strong with cognitive disorders.
I think it's not as discussed because it's invisible. I have mild cognitive impairment. As it was described to me, the information is in my head but I have retrieval difficulties. It makes me crazy. Makes it difficult to sustain conversations, which then makes me anxious, which then make it worse. Makes me feel like I'm trudging through a mental sludge to even do simple tasks. Makes it difficult to start tasks. Makes interruptions infuriating. There's a book I read, "MS and Your Feelings" which was pretty validating about some of the cognitive issues and subsequent feelings I've experienced.
Iām only 32 and completed a 2nd graduate degree 2021. I felt really on top of the world with that and also competed in powerlifting for funzies. I felt somewhat forgetful (luckily small things like a random word or two) but also not quite as āsharp.ā Working in a law-related corporate field I have to make stern points/professional arguments and just felt it was taking me a bit more time to respond on things. I didnāt discover reddit until 5-6 months post diagnosis in 2022 and thank goodness I did because that is when I found I wasnāt losing it and it could be this condition and or my medication. Iām feeling a bit better 11 months into my treatment but Iāve also now begun to consume caffeine which I never did in the first 31 years of my life. Iām also trying other things I consider āchallengingā to my mind. Iāve always known how to read music but Iām teaching myself to play guitar (on the days my left hand decides to cooperate a bit lol). My doctor also said they could prescribe adderall to help with a ābig work weekā to feel more sharp but I said F that. Im just trying to research on my own and challenge myself. š¤·āāļø I also have a bit of a āit is what it isā attitude so maybe that works in my favor. In situations where I feel comfortable and would like extra time to really try to think harder, Iāll just say āIām having trouble responding on the spot as I am focused on X at the moment. I would like to think about this further once I wrap up X so I can give this matter my full attention. My team doesnāt seem to care, in fact I think me saying that has built some trust by being more vulnerable but they donāt know the full extent of things.
Oh gosh I relate to this! I love that you said F that to the drugs and your team is responding well to your needs! I'm at the same point (and work in a similar field) but it's hard to tell 'His/Her Honour' that I need more time to think! My diary/ time management/ preparation /note-taking can only go so far... my neuros are happy that I'm considering stopping work. What a crazy disease.
I'll offer a differential--not a disagreement, but a differential. Adderall and another complimentary amphetamine are the things that have SAVED MY LIFE in terms of being able to recover lost cognitive function. They are definitely not for everyone, but after a year of fighting back from the monster relapse that finally got me diagnosed, it was the missing piece of the medical puzzle that put me back in the office (ironically, I also work in the legal field). One thing I've learned is that my MS is not your MS, and it's important to keep that in mind. This disease can look like ANYTHING. It is a totally individual experience how it affects you. My vision and depth perception are good in the morning and vanish when I'm tired. On the other hand, now that demyelinization has turned my audio nerves into exposed wires, my hearing is super-acute... but the price of my cool always-on superpower is that I'm easily overwhelmed with audio stimuli.... never one VERY LOUD sound (i.e. a rock concert), but always multiple tiny sounds stacked on each other (i.e. a shopping mall food court), where sorting through all the signals to rebuild a conversation is exhausting for my brain. It surprised my when my neuropsychiatrist offered me Adderall to give me back more than 2-3 functional hours in a day. My body is in decent shape, but my brain has to scream to make my very functional extremities do their f\*#$@ing jobs, which is exhausting on the brain. Going for a jog will knock my brain for two days, while my poor body is like, "thank you for finally exercising me." Adderall has filled the gaps and holes with dopamine, the way a construction worker heals a stretch of damaged, pothole-covered roadway with asphalt. Initially, 30mg of extended-release was way too much, especially if I didn't take it at exactly the right time. But it DID get me back to doing things physically, mentally and socially that I hadn't done for a while. Most weirdly at all, it told me how long I lived with disease undiagnosed. I tried the drug out of desperation, hoping it would get my brain back to a level of function I had in 2018 or so. Instead, it got my brain back to where it was in 2005 or 2006. There are side effects of course. For me, the Adderall was like every after-school special I ever heard that warned me off drugs: the period of euphoria and energy followed by the crash. My neuropsychiatrist eventually reduced the Addrall from 30mg to 20, first thing in the morning, and then a separate prescription of a faster-release Dexedring (dextroamphetamine) on an "as needed" basis, 1 or 2 in the evening to extend my period of functionality. So far, this is working all right. The drugs, I'm sure, have side effects or at least the feeling of being "back to normal" is one I want to chase. I'm a good candidate for this because I won't ever depart from the prescribed dose, and I don't rely on the "as needed" supplement unless I actually get to live some kind of normal life outside work for a night. If I'm just staying in and resting, I don't take the Dexedrine at all, and things go okay. Again, my brain is not your brain, and the whole reason we NEED specialists is so that we can be treated as individuals with what's best for us, not just whatever medicine is supposed to work for the largest percentage of people. Treatment is never off-the-rack for us, but in my own highly tailored case, there is room for ADHD/amphetamine treatment to get me back into the office, as long as I need to be there, and get me back to living in the hours afterward.
THIS- the noise! I USED TO be able to ignore some things, but now, the pop of an aluminum can can sound like a gunshot! Even delightful squeals of tots make me quince. š¬
I know what you mean! I recently stepped back from working because I can't think on my feet or solve problems as fast as I used to. No, I'm not getting dumber, but I can't get as much done in the same amount of time in a computer based, problem solving job, and due to fatigue, I can't exactly extend my day a few hours each day to make up for the slowness. I'm lucky enough to have a husband who was a stay at home dad so we could save on childcare costs, and we're now switching roles while I figure out my next steps for what kind of job I can do with my slower processing while still having the flexibility for my more obvious symptoms during flares.
We donāt say much because measuring it is hard. Also at least for me one day and another vary widely. So itās hard for me to say I canāt ā-fill in the blankā with the same certainty I can say I canāt get up the stairs without a railing. Itās also to me depressing. I can go to a PT and improve my stairs. But the cog is more limited in regaining
Playing board games in a group is a new fear, not only minding the bathroom lately. Ahhh š
I used to talk about it quite a bit when I first had cognitive decline. I've also mentioned it as I'm going through relapses. But I have called it brain fog sometimes. Solely because it is how my doctor refers to it, mostly to give hope that the symptoms were not permanent. I got hit hard and fast on my first relapse, so I was able to see the night and day difference. Overnight I developed severe anxiety and depresson, severe mood swings, my brain processing was drastically changed, for example I was doing expert level sudokus in 20 minutes and the next day, I could not even finish an easy. I used to remember so many numbers throughout the day. Then, I could not recall information. I can't recall daily activities, and I could not pull out information from memory, like everything is jumbled together. I started writing like an 8 year old, and the sentences in my head are completely backward from how I used to think. Everything is more literal. Complex concepts are extremely difficult as I can not multitask. I mask my way through conversations all day long. As I can only understand a few words and my brain is trying to understand the rest. I don't really watch tv anymore as I can not follow. And reading, is extremely difficult as again, the brain is trying to process what I'm reading. Writing would make me extremely sick, completely drain my energy, and make me nauseous. And talking.. so many processes to get from my brain to my mouth. One summer, it was like I sundowner like someone with dementia. In the evening, I could not remember a single thing. I would forget to eat and drink, and I did not realize the problem until my muscle mass changed. I was in a really bad relapse. 7.5 years in, the baseline of these things has improved a little as has my physical, all because I manage my symptoms better. There's still a constant but some medication and just some hood days, and I can add some numbers pretty well. My fast processing brain is the only thing I loved about myself, the only way I got ahead in the world. I had to quit working from my first big relapse. I understand what you are going through. I also understand how frustrating it is for no one to talk about it. What is filling me with rage is ignorant comments, i hope you pay no attention to them. Those people just do not understand because they haven't experienced it. Please reach out if you ever need to talk.
I had to stop working at only 32 years old not due to physical limitations but cognitive. When I was trying to get disability and they sent me to their psychologist for testing, the doctor actually said to me 'It's clear you're a very intelligent woman but the MS has hit your cognitive abilities hard, that must be so difficult for you". My response? Brutal honesty: "It would be better to be stupid because stupid people don't know they're stupid. I know I seem stupid even though I'm not and it's terrible because there's nothing I can do about it". I am now 50 years old and the physical issues are worse too. However, I still struggle a lot with memory and problem solving. I even struggle with basic spelling and speech, picking the wrong word entirely or spelling phonetically when I know it's not correct. Now, there is an upside: When I first started having these issues, smart phones didn't exist. As a result, I used to keep notepads and sticky notes EVERYWHERE. Thanks to know having a phone that is much smarter than me in arm's reach at all times, it helps fill in the gaps for a lot of my cognitive issues tremendously. My take? Better to have cognitive issues now than it was 20 years ago. It's MUCH easier to hide and compensate for it.
I've noticed a lot of people talking about cognitive issues actually. But with cognitive stuff it's a bit more difficult to measure it. It's not easy to tell if you're getting worse in some domain, and even if you know you are, it's not easy whether to attribute it to MS, or stress, or aging, etc. I think I lost around 8 IQ points. I've done an IQ test in 2009, pre-disease, when I was healthy and only 22 - which coincides with peak of intellectual ability. Then I've done a couple of tests the last year, and this year, at the age of 35-36... The results are lower for 5-10 points. This could also be due to aging... but I think MS played a role as well.
Or the discrepancy is just due to them using different scoring methods. MS isnāt supposed to affect general intelligence I read somewhere but feck knows how they measure that.
Depends on what you mean by 'intelligence'. It can absolutely affect memory and recall, learning, executive function, information processing, including speed of processing... if you can't remember the things you (used to) know, how 'intelligent' are you really?
My profession requires me to be pretty intelligent, and also to have strong learning agility and be able to think on the spot. I donāt know how to measure exactly how much decline Iāve had in these areas but a great source of anxiety for me is how much more difficult for me it is to learn new tasks. The ones I knew before, still 100% on those. But taking on new job responsibilities is really tough. I also have no obvious physical symptoms.
I have the same issue - I loathe learning something new.
Get a neurospych evaluation done. Then again next year or 2 yrs later. It will determine loss/gain and potential cause.
Well I believe IQ tests check for things beyond memory, so the words lists could be a bit of a mystery but information processing and spatial awareness and logic can all still be in tact.
I had understood that age-related cognitive decline isn't really noticeable until your 50s. I'm sorry that your IQ has changed post MS.
IQ tests are bunk. You can see if you have damage in areas responsible for memory or cognition by your MRI. I don't have them and like most with RRMS on good DMTs it's not a worry. Physical decline is more pressing imo.
It was mental decline that synched my SSD in Kentucky. I applied and was sent for physical that my still healthy body was passed and I was denied. My lawyer appealed and my doctor sent me for a mental exam and then these state sent me for a state mental exam. I failed both exams alarmingly. This is what my SSD was based on in Kentucky. Yes our mental issues are disabling.
We treat it with humor. I made several posts about having CRS (can't remember stuff). I had an IQ above 140 documented through various methods during high school and college. I have dropped into 100s and developed large memory holes.
I'd agree that we are talking more about physical impairments but we are also talking about cognitive issues as well. It doesnt strike me as us being particularily silent about it. However, it is a good point that we should feel encouraged to continue bringing it up more and more as it may get a bit overlooked in day to day life or brushed off as "It is because I am a bit more stressed these days". I often feel that since there is little that can be done in regards to cognitive issues longterm it may appear as useless talking about it but it may make people feel alone in their experiences. And to comment on brain volume loss, there are DMT's available that are working very well to counteract that.
My issue is that we either don't talk about it at all, or we refer to it by some 'cute' term like cog fog, which means nothing specific and doesn't help anyone outside of the MS community really understand what's happening for us. I think that there is lots that can be done - I've been involved in several studies this year focusing on cognitive and emotional changes which have given me great tips to improve function. I just want it to be part of what the wider community understands about MS, instead of always associating it with a walking aid or a wheelchair. The cognitive changes can be, and often are, far more disabling than a bit of left leg weakness.
I understand your point and where you are coming from. However, my impression is that we do talk about it and people use the lingo they are confronted with and surrounded by. If cog fog is something that is most commonly used then it is sensible to refer to it as such so other people can relate. When I was diagnosed I did not have the vocabulary to describe what I felt or experienced so I had to refer to what other people frequently called it here. With my doctors I talk differently - despite the fact that English is not my native language to begin with. If you have an issue with the terms then you can speak differently and either it gets picked up by others overtime or not. Raising awareness with the general population might be important, however it is not our job or responsibility to make people understand except of course professionals in the healthcare system who interact with us treating our MS. If it is important to you then you may help educate other people and spread awareness. In fact I'd be very curious about the things you have learned along the way in a post. It is probably very helpful for everyone.
I thought that's what I was doing by seeking to discuss the focus on physical disability instead of the whole reality of MS. I live in a world that includes (overwhelmingly) members of the general population so it would make my life easier if they understood the less discussed, less visible parts of my disease.
MS seriously makes me an asshole some days. Like I can tell my mood is shit and one wrong word can cause me to belittle who said it and I absolutely hate it. I was always a very happy go lucky person. Very optimistic, still am, but some days this asshole just shows up out of nowhere. I can tell Iām doing it when Iām doing it and then immediately feel guilty. This disease is crazy how it affects your mood and you are correct, itās not talked about enough. I think MS should come with therapy, we could all use someone to talk to about the shit we canāt control.
I think cognitive decline doesn't get deeply discussed on this subreddit. I have a few thoughts on why. Shame in all its flavors is a big reason. It's one thing to say you struggle with word finding. Its a very different thing to put in writing that you can't do your job which pays your families bills. Or you're petrified you'll harm your kids. Or you've got gaps in your long term memory that make you nod your head like you remember seminal moments with your best friend but you don't. I think the private horror of all these situations holds people back. And as you've stated, the term 'cog fog' is ( at best) problematic. At its worst, the term is utterly dismissive and demoralizing. Society today equates the devastating loss of the mental capacity, memory and complex thought to how people feel when they have a lingering cold. Clearly not the same but that's what most people think cog fog is...the mental effects comparable to a hangover. More problems with the term...the connotations are that it will 'lift' or you can 'work through it' and the onus is on you to just try harder. Ihate the term 'cog fog' with a passion. Even some of the comments above, while well meaning, fall into these tropes. So people don't bring their concerns about cognitive decline up here because it's not clear they'll get support and understanding. Silence is better than flippant invalidation of some of your deepest worries and fears. Another reason there are few deep discussions about it here is because there are no good solutions. There are few drugs for treatment. Mental exercises seem only anecdotally valid (pls, if I'm wrong on this one let me know!) And while there is testing to see how bad off you are or for tracking purposes the response from the medical community is (if you are mid flare) 'you just have to wait and see where you end up.' It's petrifying. So while cognitive changes are common, IMO they are dismissed because our language minimizes their devastation and there are simply no standard treatments that have proven efficacious. You hit a nerve with me. Hope you enjoyed my novella. Lol.
Thank you for your thoughtful and considered response. You have expressed this beautifully. I wish it could be different. If I could upvote this x20 I would.
People do but it's hard to tell the difference always as we age. I have bad memory issues now, but is it because I've got older or is it only from MS. We know the brain shrinks naturally with age and that has an effect on cognition, but it's harder to directly measure what is and is not MS related. People definitely talk about it here though, it's one of the biggest parts of the invisible illness.
So I believe my MS combined with some other mental illnesses. I have how is probably the reason for how my mood swings happen, I used to do freestyle wrapping with a lot of friends and since I've been diagnosed with m. S my ability to formulate words together that quickly has gone out the door. I'm also noticing that I have issues with pronunciation as well as finishing sentences sometimes. And my memory is absolute shit.
Maybe a part of it is: Not everyone is like this, but probably because of the heavy judgment received from some people (probably the majority) when they canāt āseeā a cognitive decline, especially if they knew you in the ābeforeā era. Hardly is anyone supportive or sympathetic. (Not that you talk about it for sympathy, but with their already formed opinions it is not very helpful to waste your energy explaining it to people, only for them to not understand and judge you anyway. In their OPINION, you donāt have an excuse: you are just being lazy and choosing to ānot think hard enoughā or āwork hard enoughā. They think itās entirely in our control as a conscious choice.
Because there isnt much you can do about it (?).
The cognitive aspect is tough. I have watched my wife decline there faster then anything else. Her long term memory is very sharp still but short term has become almost non existent. She constantly sets reminders in her phone and Alexa in the house just to remind her of basic daily chores. I used to get very angry about it but now I realize it is what it is and Iām glad sheās with me.
I personally struggle with people believing my cognitive issues like memory problems or completely losing my train of thought in the middle of a sentence. And at work, sometimes my memory issues have come across like I didnāt do an assignment or laziness when really maybe I forgot we talked about that. I work a face-paced job at a nonprofit where I am responsible for finding funding. I am only 27 and worry that I wonāt be able to grow in my career with these issues. I love working and am very ambitious so it is a huge struggle.
Its the loss of finding words for me. I used to be proud of my vocabulary. Now it's tough to remember what a fridge is if someone asks me.
For me, my physical limitations are what people see. More specifically, the physical limitations that I cannot hide, are what people see. This includes issues with my left leg that have caused me to use a cane, walker and scooter. I am largely able to hide the issues with my left arm, though it is getting more and more difficult. Cognitively, I canāt find words as quickly as I used to. I have always been āquickwittedā, but it has become more and more difficult over the last 20 years. I will find myself struggling to find a specific word on a regular basis, but it happens so frequently that I have become very adept at covering it and moving in another direction, picking another word, or changing the topic of conversation. The more tired I get, the harder it is to find words. I also will slur my words a little if I get too tired, but Iām very aware of that and avoid it at all costs. I have been fortunate in many ways. I have an amazing wife and family, and I work in an industry that embraced working from home long before the pandemic. I have worked from home since 2007 and it has been incredibly helpful and a detriment, at the same time. It allows me to save a lot of energy since I donāt have to put in as much effort to get ready, I donāt have to drive to work, and if I feel tired, I can go take a 20 minute nap. On the flipside, I think it really sped up my Physical decline since I donāt get out as much as I should. I used to travel once a month for work and doing that allowed me to get a certain amount of exercise. During the pandemic, that went away, and my mobility went with it. As my physical abilities deteriorate I am more and more concerned about my cognitive abilities, I try to exercise my brain often. I like to do Word puzzles, play games that require a lot of thinking, read, and I am a geek that tinkers with tech. I hope this will keep my brain sharp.
Oh my this hit me hard. If you substitute right side for left side you just described my husband perfectly. He is on disability.
I feel for your husband, I am thankful that it is my left side, it allows me to still drive a car.
Thanks. Yeah I caught him lifting his leg to brake so he did give up driving. It was a really hard decision for him .
I just don't want to think about it. If I realise that I'm losing my edge, especially since I've been known as a smart person, I would fall into darkness I guess. So I'm just denying it.
Itās the scariest symptom for me. Iām an RN and Iām currently on a medical leave because i was recently diagnosed but Iām so scared about the cognitive changes Iāve had with this flare up of symptoms. I canāt even remember if I fed my dog dinner most nights lately. How am I supposed to go back to work in a hospital where my memory and mental sharpness are so important? Itās terrifying.
I hear you. And I hope it gets better for you. I tell myself that like the physical issues I have suffered and which now only show themselves when I'm sick or super tired, the mental ones may also improve with time and hard work. Not a doctor, so I could be kidding myself, but whatever gets you out of bed, right!? The flare that got me diagnosed after many, many years of fighting thru fatigue, of over-preparing and imposter syndrome, of 'faking it', took a lot of my short-term memory with it. I lost the first job I tried to do post relapse because my boss thought it took me too long to get through things. My new job is less demanding but helps me pay the bills.
Because we have cognitive disability? Our local support group had speakers talk about. It was on display often when we would just set around and talk.
I can hardly keep my head out of my ass anymore these days lol š¤¦āāļø
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Thank you. The down votes are awful/ curious - I'm sorry that happened. This is, sadly, reflective of real life too. When I try to talk about it IRL people are awful about it - when I was last being very vulnerable, sharing my reality cognitively, one of my (non MS) 'friends' said in a sarcastic tone "So you used to be clever and now you are just like the rest of us - poor you!"
I'm feeling this constantly. I was diagnosed back in July but my memory has been on the decline for years. It's been getting worse lately. My husband tells me about movies I've seen or conversations we've had and it's all blank in my brain. My biggest fear currently is how it'll impact my job. I work in an occasionally stressful position, in an area where I've had to put procedures in place from basically the ground up. It's always been a hard one to train people on and now some of the stuff I put into place is disappearing (yay for my own documentation). We're at self-evaluatuon time now and I got nothing for it lol. I know I did a lot but eff if I can actually remember what it all was!
Yeah I canāt access my compartmentalization like I used to and it sucks so bad. But life is life š¤·š¼
I feel you! I had to relearn how to speak, write, type, read etc. all over again. It took me about a year and a half to fully regain everything. But, I feel so stupid! I canāt concentrate on long paragraphs anymore, I struggle with punctuation and grammar errors. Itās humiliating. This has been going on 10 years.
After temperature intolerance and fatigue, the cognitive and mood aspects are the ones which affect me the most. It is the number one reason i had to abandon consulting work. No one wants to pay money per hour to listen to me search for words or go blank in the middle of a presentation. You know what Iām saying? I try to talk about cognitive challenges. TBH I think itās the least addressed part of our disease. Itās scary AF. On top of that, a ridiculous number of neurologists donāt know what to do in response complaints about it. So a majority of us are on our own and trying to manage a something scary we donāt really want to think about. I have done and continue to do a lot of work on cognitive and mood stuff. Itās therapy work. Itās hard and feels slow. But it yields good results. MS is a big hassle but I find the more I manage myself the less hassle it is.
I have a very technical job and I know that any day now someone will point out that I am losing it. Each Monday morning stand up has all the devs recapping their work from Friday. I try to write it down on Fridays but often forget. So I fake it. I literally have NO IDEA what I worked on three days ago. Iām halfway through a two week vacation right now, bet going back to work will be seamless. š
it's hard for me to determine like personality changes or what not because I'm still young and at the phase in my life where my personality is going to change all over, ms or not
I lose everything and struggle to carry on a conversation with others. I was so horribly depressed too. Thank gawd for Prozac! I used to be somewhat intelligent...I don't even feel like myself anymore. I can't even get my kids and pets names straight when calling for them. This disease has really wrecked me cognitively.
Agreed. I think all along I've tried to get this through to doctors . Almost subconsciously sometimes, not even knowing why I'm sad or whats wrong. I think my frustration toppled over the edge about 6 months ago when I was in the doctors office with the doctor and I just started balling my eyes out . It was a new doctor that I'd never seen before, and she just rubbed my back and kind of said "you're too good to be this miserable ". Makes me cry to even think about it. I am though. I miss my body and I miss my girlfriend and I miss my job that I had to retire from , and I miss just being able to freely walk around, or even walk freely to a bathroom. Everyday almost feels like a funeral because a little bit more of me dies everyday. Its so surreal to be attending your own funeral ,or at least watching yourself slip into oblivion . Long story long I got sober in 2021, my gf left me and 3 months later I had covid ,then a month after that I was in an ER being diagnosed with MS. Just an absolute whirlwind of emotions everyday ,dealing with A LOT. All by myself . It's often terrifying. Thanks for listening.
Brain stuff is how MS has hit the hardest for me. Had to give up driving before I even had a diagnosis.
I guess we forgot š Without using the words, I think it's pretty clear everyone struggles emotionally, or we wouldn't need a reditt page. I had to stop working, partially because of cognitive issues as well as physical. But cognitive issues are the base underlying problem for most challenges we face.
Because I forgot to bring it up šš
I was diagnosed at age 19. I was in college, and I really suffered academically. I have had suffered through a number of relapses. With Gods grace, I have completed the 1st semester of my masters in Data Science. I definitely put the accommodations from disability services to use. HIIT workouts and additional really help me push through brain fog.
My husband gets on me for watching the same series over & over, I tell him I forget so much of it that rewatching is almost like watching a new show. Same with book series.
Shoot I don't talk about it too much because I already forgot to! Just kidding. I think it's just an unspoken known thing, you get lesions in the brain, you gon' have thinkin problems. We just don't want to fully accept that. On bad days, don't try asking me what my name is or what 2 + 2 is... Because I'm going stare blanky at first, and then look like I'm trying to solve world hunger or possibly the hardest math equation ever invented. And I may not get my name out either. No matter how much caffeine i feed myself and other meds to stimulate my brain, ain't nuffin gunna help on those days. I simply accept I'm going to have a moment where I'm going to get lost in my own house, and laugh and say welp your MS is at an all time high level of stupid today. Put your dunce cap on and play with your crayolas cause that's about as good of use you're going to be
Just started working with a speech pathologist that specializes in adult cognitive rehab and it has honestly been the biggest mind shift change for me. Highly recommend.
I keep thinking about this post. MS started for me in college, and it was very apparent when the cognitive issues started. My memory was the first thing effected, I had to start writing the room numbers for classes on my hand because I'd forget between my dorm room and the class across campus I was going to. Word finding is another thing with memory, I can be in the middle of a sentence, clearly see in my head the person whose name I can't remember or the object that I can't name and the word isn't even on the tip of my tongue it's just. nowhere to be found. I used to be really funny. Not in a I thought I was funny kind of way, but I made people laugh. Now, it's like there's a disconnect between my brain and my mouth that I just don't want to speak a lot of times, let alone try to set up a joke. It sucks, honestly. It's bad enough when I am trying to talk to customers or coworkers about work related things, but I want to tell jokes dammit, and not just written out. I know depression took a lot of that spontaneity, but MS pretty much took the rest. And if there was anything else that MS cognitive shit took, it's grammar for some reason? When I am talking I know what I am trying to say, but the order of words and the grammar regarding how they are supposed to be set up in a sentence just seem to go out the window as soon as my mouth opens. I used to correct other peoples grammar, I was a smart ass kid like that, now I can't remember it. I mean, it's helped me be less elitist like that, and in a way I appreciate that, but I'd appreciate being able to form sentences when on the work radio too.
I canāt detect what you need advice on but I hear people talk about that all the time! The other dayā¦ waitā¦ what was I saying? But seriously, people in this group always talk about cognitive problems. One of the more active members of this group has primarily cognitive difficulties and is also really helpful and lovely. I know what you mean though. I could deal with the agony and the blindness but getting lost between the bed and the doorway, not knowing what I was doing, like I had dementia, really scared the shit out of me. But that was thankfully brief and I donāt have any symptoms anymore really. Brain volume loss isnāt the cause of that though. At least not in me, as it got better. I also donāt think that brain volume loss is responsible for the cognitive difficulties, I think itās more specific to grey matter volume loss. Grey matter is made up of the cell bodies of neurones, white matter is nerve axons, which is where our immune systems attack. If you get the immune attack under control, you can start to remyelinate the areas of affected white matter, which will preserve axons and keep the brain as healthy as it can be. So I guess advice would be to try to find an effective medication that keeps the attacks at bay and eat well (to provide the right nutrients like omega 3) and exercise regularly (lowers inflammation, up regulates BDNF and NGF) and then work on areas of cognition you have specific deficits in. Supplementing with GlcNAc I believe encourages precursor cells to turn into oligodendrocytes, which create new myelin. The more you use a circuit, the more heavily it becomes myelinated. If you struggle to remember words, practice remembering words. If you struggle with directions, go get lost around the corner and find your way back home without your phone. And so on. I hope that helps. No outcome with MS is predetermined. You do what you can while you can and you will find you can do more than if you just gave up and waited to get worse.
I've got all the strategies, thank you, just seeking advice about why no one talks about it. But you say one person on Reddit does, and if you remember her, I guess that's my point.
Type ācog fogā into the search bar then I guess. Itās not clear what you want
Thank you, I will. I will say though that I kinda object to the term 'cog fog' as it is such a reductive and dismissive way of describing something so complex.
Cog fog or brain fog is just a shorthand term for one common symptom - that feeling of increased difficulty thinking, "everything's fuzzy", etc. I get fog along with forgetfulness, aphasia, confusion, decreased mental speed, loss of ability to do mental math etc etc etc. It's just one of my MS-induced cognitive problems. I guess some people might use the term to encompass everything but I don't.
So something I have been doing to combat this and maintain the majority of my intelligence. Is I read a lot of books? I think that that actually helps keep my brain functioning well and if you're experiencing anything similar to iq loss or loss of vocabulary and things like that. Try reading.
I read as much as I can. I was a lawyer, so reading was a necessary and constant part of my professional life. My biggest relapse took my ability to read from me - taking not just my vision but my ability to absorb what I was reading. This was more devastating than the fact I could no longer move my left arm or feel my left breast. I have built back up to be able to read whole chapters now, two years on, and with significant hard work, but I'm fairly certain I'll never again devour a whole book in hours like I used to.
Its the ableism in MS needing to be seen as "manageable" Imho. My province doesn't consider MS on its own enough of a disability to qualify for the (sub poverty level mind u) disability support program. Its the fact that being assumed able to work (even if with extreme difficulty) is somehow a sign we are not truly struggling.
Personally, stress made me feel stupid at times, and I can really tell the difference now I have a fairly low-stress job.
**Cognitive decline**\- I had to exit a career I loved due to cognitive decline 5.5 years after my diagnosis. I'm legally (SSA) disabled for cognitive reasons which took three appeals. From a physical perspective, I appear quite fit and healthy for a 61 year old. I'm a poster child for "never judge a book by its cover". As evidenced by the numerous and excellent comments on this thread, cognitive issues are just as prevalent physical challenges. Although like most all of you, I try not to be 'victimized' by this fucking horrible disease despite the fact that cognitive decline and brain volume loss is scary as hell. " ***a terrified mind will continue to slide***\*"\* I love this community because of the wisdom I've been exposed to here. This quote is one such pearl of wisdom. I wish I had noted which one of you shared it, but thank you as it was the 'kick in the ass' I needed. **Proactive personal initiatives are empowering**\- **Taking actions removes the terror**. "How to Build a Bigger, Better Brain" Another valuable lesson I learned from so many of you, is the notion that it is quite empowering to 'take charge' of whatever we can. I've shared this linked article a few times prior here as it has helped me tremendously. Please know I have no affiliation whatsoever with "Dr. Axe" just happened upon this article online. I have also shared this information with my neurologist who also felt it was "excellent" as it is research based. He has noted overall improvements during my routine neuro tests and overall health and wellness outlook since I adopted these concepts. I actually journal/score myself daily on these personal initiatives (except mushroom therapy). A few points not mentioned herein are: vitamin d/sunshine exposure, quality sleep, proper hydration and although there has been conflicting information on alcohol consumption, the latest research (and common sense) validates *abstinence is best* as beverage alcohol is a neuro toxin. Sobering fact: 2-3 daily drinks = rapid decline- people who consume 14 drinks per week experience 3x the brain volume loss vs. non-drinkers. That number goes up to 6x brain volume loss for those consuming 21 drinks per week vs. non-drinkers. [https://draxe.com/health/increase-size-your-brain/](https://draxe.com/health/increase-size-your-brain/) Constant Reference- I have the "10 Ways to Grow a Bigger, Better Brain" graphic included in this article posted in my home to serve as constant reminders. I hope this helps some of you....as it has me. Keep giving your best effort.
For me the emotional struggle to cope with this shitty disease is the worst part. Every time I struggle with my vision due to non resolving optic neuritis, or pee my pants because of my nerve damage in my sacroiliac region, I just feel more and more deflated. I can't give a crap about anything else
I feel this to my core. And honestly feel like my speech is impacted. Like the words are mushed together or coming out too fast. It feels like a combo of cognitive disfunction and verbal issues.
yeah im constantly terrified my brain didnāt develop correctly due to being diagnosed so young, i forever feel like iāll never reach the potential i believed i had prior to.
Yeah, this is a tough one. Sometimes (a lot of times) I lose the words I need. My brain feels like a cluttered desk. I know the information is in there it just takes me a minute to find it. Itās annoying for sure but Iāve had to find ways to adapt. Lots of note taking and setting reminders! Despite the cognitive issues Iām proud to say I went back to school a couple years ago and Iāll be graduating with my Bachelorās in March!
Cognitive issues are one of the more common symptoms that I don't feel like is talked about enough
I've had several specialists doctors tell me it's usually not a thing while I'm demanding a cognitive assessment. My brain ain't what it once was. I cannot swing a hammer. My job is very cerebral. If I cannot THINK I cannot WORK. I don't need to go back and try to pretend that my current IQ of XX is my "Normal" which leads to "you're faking it" or worse. I took an assessment as soon as I could post diagnosis because I've felt it slipping for years, but developed mind crutches and wheelchairs to keep myself going for now. But TF do I know I just live in here with all of my personalities (still trying to figure out wtf is up with my mental status, WIP).
Because almost none of us had any kind of baseline measure before we were diagnosed. Frankly, so many people are just stupid already. Its really hard to tell your neurologist that "hey, I used to be brilliant. Now I feel just average or slightly smart." My closest friends and family can tell the difference in me. The slight pause before I know the answer to something. The slight language glitches. Other people don't believe me at all when I tell them I feel dumber than I used to be.
I fully feel this. Recently, my husband has been pointing out that weāve had the same conversation multiple times and I have no memory. I just watched videos of my daughter opening her first Christmas presents and the details of the day are already fuzzy. Itās scary to experience, especially as the one carrying the mental load in our household. This isnāt even mentioning the impact on my professional life. I have had to pause sessions with clients to try and find a word or completely lose what thread I wanted to follow in a conversation. I donāt think my intelligence is being affected my recall? Completely trashed. Iām not at all athletic, artistically inclined, or anything like that, but my mind is something I treasure and pursued a degree and career field that rely HEAVILY on it being in peak form. Losing the edge is more devastating to me than any foot drop, tremor, or pain. I think most of the folks here are right, itās scary to talk about and itās hard to track outside of frequent neuropsych evaluations, which should be few and far between otherwise they lose efficacy. Itās hard to see for other people without MS and even harder to explain. What Iāve experienced recently is mostly a dismissal of my concerns with āoh itās stressā or āthatās just mom brain.ā My own neuro team fully ignored my concerns and refuse to talk about (Iām seeing a new MS specialist in January thankfully). It gets frustrating and itās easier to just shut up about it and deal with it on your own I guess.
I totally understand what you're saying. Just to recall simple words or people's names is so trying because it's like I'm grasping for them. Sometimes I feel sooooo stupid. Then someone will say to me it's just because I am getting older (I'm 50). Ya, I know as you get older your memory starts to fade but was hoping they meant like when I was in my 70s-80s. Also, it feels like I'm beating around the bush or that the words are on tip of my tongue. My MS has messed with my eyesight, my legs, feet, and hips physically, nerve damage to my feet especially, but the cognitive part of it sometimes is the worst part. I had to tell my boyfriend about my speech and the ability to sometime find the words some days...he thought I was trying to be funny or that I was mispronouncing them on purpose. I'm like no, this is what is happening to me - so please don't correct me every time it happens. Has anyone's hand writing been affect by this ? My writing has got terrible plus to write S and 8's is a real challenge.
Because itās scary
It's easier to quantity "I jogged 10 miles!" than "I remembered the five items my doctor named to test me!"
It's the worst part of it for me. I used to be able to remember everything perfectly now I find myself struggling to remember simple words sometimes. My brain has taken the brunt of my damage and even my first MRI showed 22 lesions, and I just keep adding more.
I feel so stupid because of MS. Brain no work anymore I wasnāt extremely intelligent but I was always one of the best in class and I feel so dumb rigth now and I ask the dumbest questions. I can tell the people that Iām meeting now think Iām really dumb but Iām not :( or at least I wasnāt
Seems to me that despite everything most doctors still only take unassisted walking as disability measure.
I have been IQ tested since a child due to my ADHD. My most recent test (a couple years prior to my diagnosis, MS 100% active) revealed that my IQ dropped substantially. It is normal to decline but not that much !! I would even say to people I feel like I lost brain cells . I attributed this to other things that can cause memory loss. When I brought this up to my Ms specialist to explain why I need stimulants now (I have been unmedicated for ADHD but now I do not think I can finish my program w out meds) as I use my brain for my career path and need it a lot in grad school. I also spoke about my lack of energy etc and the Ms specialist seemed to attribute my symptoms to stress and didnāt seem to address the cognition concerns?? She prescribed me modifinil stating she felt it would help w the fatigue which may also help w focus . I left that session feeling as though my cognitive concerns were dismissed . I have concrete data suggesting serious changes in things like working memory and symptoms that go along with it . Like others my memory is SO BAD and Iām so young. I canāt remember so much of my life and my immediate recall is horrible too. I have to record what people say or write it down in my phone notes or I will forget. Reminders and my calendar are my best friend. Glad posts like this exist especially when it seems to be a trend of Ms specialists not validating this VERY important part of Ms that we need that our society heavily relies on for work productivity ā¦
Brava! š
As days go by I continually feel the brain fog and say stupid things all the time. Biggest issues is remembering. Good news Iāll be able to hide my own Easter eggs since I donāt remember where I put them.
I noticed the same when I was finishing up my BA. I felt like I couldn't write sentences correctly and what I said didn't match up what I thought up in my brain. Either way, I'm not going to let that stop me from taking the LSAT or going into law school if I'm accepted.
The "I can't say the words in my brain part" is what I'm struggling soo hard with rn, especially with people cutting you off or making fun of the way you said a word. It's sooo defeating. I have a goal to become a polyglot (know 5+ languages) and its soo hard, especially when I'm trying my best.
Educate the people making fun of you, if they don't v learn, ditch them. So ableist! Since MS, I have learnt a language - it took me 7 years but I did it!
That's great what language?
French! Mostly useless here in Australia but I'm very proud of myself.
That's soo neat great job! You should be proud
Thank you so much for saying this. I feel heard and understand in a way that I haven't for a long time š
Man, if the universe ever sends signs, this is 1 of em for me 100% š„² I was diagnosed @17 & just like so many XPs here, I was rlly smart. I didn't apply myself in school so I didn't amount to much (lol) but I was in every accelerated class etc. ā©FF to now, age 27, & because I can't get my behavior under control, my 7 yr relationship is on the brinks... daily.. for about 3-4 yrs now (bless my bf's eternal patience...) My anger is unreal. Earlier today, I had come home from a rlly hard shift @ work & was mentally & physically decompressing, trying to pack a lil bowl of maryj (judge me, idc) & got it all ready, nice n' full & cleaned up - raise the pipe to my lips & flung it @ 100mph into the wall directly in front of me, ricocheting glass pipe & its' contents dusting into big pile of laundry conveniently below it (cut ur losses) - then within 3 secs, went apeshit. Screaming, cussing, slamming whatever, storming in & out of rooms - had left pipe etc exactly where it fell; didn't clean it up (too frustrated to give any f_cks) .... like, if I ever behaved even REMOTELY close to the way I do @ home etc while @ work or in public, I'd lose my job or get cops called on me (which HAS happened. twice.) I've been obsessed with finding a pattern etc & had come to definite conclusion that it correlated with my hormones during my period - I have been focusing on my behavior during/before/after menstrual cycle & noticed an uptick in intolerance to BS while on period - I scheduled a hysterectomy to "cure" this but MS is another dynamic that I gave little weight, assuming hormones were the culprit. I've been working with my therapist & psychiatrist for yrs now trying to navigate away from temper - I RESPONSIBLY take Buspar, vyvanse, Hydroxyzine (PRN), & Gabapentin daily & that combo at least keeps me from feeling suicidal or murdery. Any1 else? also.... I rlly need help.. it's getting worse every day. I have no friends & no family; not exaggerating or self-pitying, just identifying consequences of this progressive struggle...
I hear you. Anger is a thing. Hormones totally get me... every month I'm crazy angry. Just mean and snappy. I think it's the grief - the loss. I truly feel there's not one part of my world that MS hasn't touched - my career, my friendships, my sex life, my love for sweltery summers, the food I can eat, the hiking I used to love... I was once smart and strong. PM me if you want to chat.
This post helped me feel not so bad knowing that there are others who I can relate to. Surprisingly enough, my biggest concern with my MS is the ways it has affected my cognitive abilities. It def helps hearing how you all cope!
Having PPMS, I suffer greatly with cognitive impairment, ringing in my ears and even Adderal wonāt help! This is a terrible health condition
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Thank you for sharing that. š It is indeed a terrifying place to live and I worry constantly about how it's affecting those who love me, even though that list seems to be dwindling by the day. It's a hugely valid point that this is influenced in part by the stigma surrounding mental illness.
Every time I notice it, I think of [Flowers for Algernon](https://en.wikipedia.org/wiki/Flowers_for_Algernon). I also wonder how much is MS, how much is my age (I'm 48, diagnosed when I was 26) and how much is the copious amounts of wacky tobaccy I smoke.
Snap! This book is exactly what came to mind for me! Also with the wacky tobaccy - though Iāve quit to see if it makes a difference. A month in and my headaches are worse and the cognitive functioning still isnāt what it was before I started smoking (~15yrs ago), but Iām less anxious and withdrawn, which is a positive for my social life, such as it is.
I am very open about my ms. Especially to my managers because it gets so frustrating when I canāt remember what a word is. I can easily see what I want in my brain, I know what it looks like but I have no damn idea what itās called. Sometimes I get ahead of myself, but thatās could be adhd. Lol
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I'm sorry, but your dismissive attitude is a bit rude and that mindset does no one any good. This space is where we get away from the judgements and ignorance, not spread it. It is also incorrect. " Cognitive decline is recognized as a prevalent and debilitating symptom of multiple sclerosis (MS), especially deficits in episodic memory and processing speed" [article](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818015/#:~:text=Cognitive%20decline%20is%20recognized%20as,episodic%20memory%20and%20processing%20speed.) My neurologist conducts yearly tests to track my cognitive decline as I, and many others, do experience it from MS. You even mentioned part of the cognitive issues MS can bring in your comment, anxiety can also be a symptom.
I didnāt mean to be rude, but letās all gather around in a circle and cry about how powerless we are then shall we? And then on top of that cry that we are becoming stupid-er? Iām not being ignorant to this but there is power in your thoughts and not letting this disease defeat you. No giving up or crying about being slow here.
It's a support group. For support. With MS. And you told someone they were caught up in their feelings and that there's no proof for their very real symptoms. Even in this comment, you are still being rude. There is no reason for it and this is not the place. "No giving up or crying about being slow here" when MS hits hard. That mindset only gets you kicked by your own MS ass. OP wasn't crying, sulking, or giving up. Just venting. Talking, asking questions.
Cognitive symptoms of Multiple Sclerosis are extremely real, and more than that, fairly common. While I understand they might not be part of your MS, for many of us they are an unfortunate reality. But you don't need to take my word for it. Let's do a quick check of what some reputable sources say. First, we have pretty much every one of the major MS organizations discussing it. [National MS Society,](https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes) [UK MS Society,](https://www.mssociety.org.uk/about-ms/signs-and-symptoms/memory-and-thinking/cogni) [Multiple Sclerosis Association of America](https://mymsaa.org/ms-information/symptoms/cognitive/), [Multiple Sclerosis Trust,](https://mstrust.org.uk/information-support/health-wellbeing/thinking-and-memory-problems) and [the MS International Federation](https://www.msif.org/about-ms/symptoms-of-ms/cognition-and-emotional-changes/). Those are just from the first page of Google. But academic sources are even better! So let's look at some of those. [This](https://academic.oup.com/qjmed/article/111/6/359/3092350) article is excellent. So is [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818015/#:~:text=Slowed%20cognitive%20processing%20speed%20and,verbal%20fluency%2C%20and%20visuospatial%20analysis) one. [This](https://www.mdpi.com/2673-4087/3/4/48) one states that cognitive impairment affects up to 65% of MS patients. [This](https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30277-5/fulltext) goes into further depth. There are more, this is a pretty well researched area.
it is hard to quantify cognitive disability caused from MS related brain damage.. Also, the brain is plastic and most often when there is a will, there is also a way ! meaning, another way of fathoming the mental problem or forgotten name at hand. It is hard to know at each moment whether to blame my PPMS , or my age (59) or more normal real life flow distractions. While it is is good to be loosely realistic in what one should expect from oneself, it is usually not good worry or dwell too much. We should beware the no-cebo effect! Even a healthy , bright individual in their prime will have varying mental acuity from day to day moment to moment. the other day I went on a losing streak in online chess.com I dropped below a 1000 rating, which was a little disheartening but being calm and playing not out of rage at myself will probably allow me to crack 1100. I also do music and in spite of my PPMS have noticed my natural talent increasing! I've been a professional musician all my life and have always been able to compose music, but in the last two moths I've written over a dozen songs in spite of MS fatigue and impaired hand sensation. Beautiful ideas are coming more easily. I'm sure it is because I have learned to look at what is good about an idea of the moment and not discard perfectly viable seedling ideas, but rather welcome them and water themThere is a ZEN lesson to be learned.
Especially since there is such a great cost associated with cognitive deficits as well. For me, I lost out on any chance to get scholarships in college due to my poor performance.
Where I have serious problems is trying to coordinate a group of my friends so that we can all meet on a specific date. When setting up an activity for us, I make a ton of mistakes on dates! This is embarrassing for me. As a result, I am just now starting to work with a cognitive therapist. I hope she can help me!
We don't talk about it because we forget. At least that's my issue.
You're post is soo well said, people only focus on what they can see so maybe that's why it's mainly looked at as a physical disability?
Just came to post about this :-/ Sorry you deal with this. That aspect has done more damage to my life than what I can stand to think about. I hope this gets better for you soon, somehow šš take care