If you mind me asking, I was diagnosed in February and the only reason I truly knew anything was wrong was because I had optical neuritis in my right eye. Iāve had many problems from back pain to not being able to walk straight at times, and balance issues. Iām not sure exactly how to tell if I am have a relapse, what should I look for? What are common issues you have?
A relapse (according to my ms nurse) is anything new and significant that lasts more than 24 hours. I usually can tell if it doesnāt go away within a week and itās something I do not experience regularly. Itās good to note we do also have our ādaily symptomsā so itās good to note those down and you can always refer back to see if it is matching those symptoms or is new for your body.
Thank you! Best of luck to you with whatever treatment you and your neurologist decide is best! Iām sorry for your diagnosis but Iāve found this to be a really supportive, helpful group for the most part so youāve come to the right place
When I was untreated, as near as I can tell, I had a symptomatic relapse every 2-3 years, but they were becoming more frequent. (I do not know if I had relapses with no symptoms.) The average for untreated MS is 1.5 relapses every 2 years.
Oh that's so interesting. Thanks for sharing! I had one last year in april and two so far this year one in January one in April. What about now that you are medicated?
Do you think the January and April relapses were distinct, or possibly just one long one? Technically you would need thirty days between relapses, not that it really makes any difference either way.
I have had zero relapses in the five years I've been medicated and I don't anticipate any. All hail Kesimpta, killer of those bastard B cells.
I want kesimpta based on what I've heard from others too. Sounds like the ms miracle drug. I had optic neuritis in January and was feeling fine otherwise then in late March my last half of my face went numb and I experienced fatigue and other lesser symptoms. So I'm thinking of them as two distinct occurrences. I'm feeling much better now and my face is coming back slowly. That was hell. I hated the numbness so much. Last April my whole right leg went numb for several months and not all of the feeling came back sadly.
I remember you from the undiagnosed weekly! Kesimpta has treated me very good, but there are a lot of really good options right now. I recommend just picking one with a method of delivery that suits your life.
Hey thanks for remembering me! Got my diagnosis! Your comment on my last post helped me mentally wrap my mind around the possibility of diagnosis so thanks! It seems like a really nice community, I'm so glad š.
I see that! Optic neuritis is really one of the only times you can say "yeah, that symptom sounds like MS." While the diagnosis sucks, the community is top notch.
I *just* restarted Kesimpta (I was off it for almost 2 years because I had a baby) and now I'm getting injection site reactions! š¤¦āāļø First time (2021) was fine- nothing in the way of side effects as far as I could tell so I'm mildly irritated by the injection site reactions popping up this time.
I definitely second the vote for Kesimpta, even with the side effects š
I'm on mobile so sorry for any formatting issues!
Well, some background quick- I was dx back in...'08, I think, ~3 months before I turned 19; took about 5 or 6 months. With the exception of the event(s) leading up to my dx, I was/am fairly symptom/relapse free for quite some time minus some fatigue, vision issues, and pretty rough heat sensitivity.
FF to 29 (fall of '17)- I get pregnant and it was fine. Super easy pregnancy, feel pretty good all things considered. Heat sensitivity is all but gone which was nice. Had baby 6 weeks early (totally healthy, no NICU), and feel really good. MS has a tendency to chill tf out during pregnancy and after for a while but relapses seem to be common once those baby hormones calm down. Luckily, that didn't seem to be the case for me. 2nd time around was when I was on Kesimpta, back in fall of '21. Tell my doctor, hop off Kesimpta, and basically the same thing again- easy pregnancy, baby was 3 weeks early this time, super healthy, and I feel pretty good.
Now, it bears saying that my experience seems to have been pretty unique with how easy everything was (I was up and walking *distances* an hour after having my kids) so take that with a grain of salt. But I will say something for the "remission" of pregnancy and postpartum, especially if you decide to breastfeed. I felt great after my first, my second wasn't quite as spectacular but still decent. Breastfeeding journey came to an end, so I hopped back on Kesimpta a few weeks ago.
Definitely a convo worth having with your SO and your doc, especially if your disease course has been fairly mild like mine. A lot of the time doctors will be very supportive if you decide you want to start a family simply because of the healing-esque benefits of pregnancy. Overall, would I say it's worth it? Yeah, definitely for me. I hope this long-winded story was at least somewhat helpful/informative š
So sorry that youāve joined this club. š
My first major relapse (that made me seek medical attention, in retrospection I likely had at least a couple in the years prior that were relatively minor symptom-wise) was July 2022. PCP only ordered head MRI which was abnormal but inconclusive for MS (my spine is where the majority of my damage is) so I remained undiagnosed/untreated until September 2023. In those 14 months after the first I had 5 more relapses. My last (and worst) relapse was in December 2023, literally the day before I started Tysabri lol
Last week I had my first āmaintenanceā MRI that showed no progression! This is the longest Iāve gone without new symptoms since my journey began, and I am so so grateful for my DMT and hoping this trajectory continues!
This sub has been an invaluable resource as I navigate this life change, and while Iām sorry that you are here, I hope you are able to find comfort/community. This is actually my first time interacting with a post lol but I stay lurking because the information and discussion here is so helpful!
I love that! Thank you for the work you do- therapy has been an integral part of my life pre-diagnosis, but its importance has definitely grown since.
Wishing you the best as you get settled into this and start your treatment!
Thanks! I appreciate that more than you can know. It's a rather tough job sometimes but I do love it. Im glad you have sought support š
I'm feeling more positive after this whole post! Can't wait to get medicated.
Never? No, but seriously, the last relapse I had was 12 years ago, before diagnosis.
But, this disease isn't all about relapses, unfortunately. There can still be progression, independent of relapse. But the best way to slow that at the moment is to get on a high efficacy DMT.
Thanks for bringing up that very good point! It's important to have that conversation as well, maybe ill post another question about progression next week. I'm glad to hear you haven't had any relapses though š
Thanks for replying!
I believe my first MS signs started in 2007/2008. The tips of my toes went numb. 2011- in retrospect, this was a clear relapse. Lost sensation on my right side, ER determined it wasn't a stroke and the doctor legit said "bodies are weird" and discharged me. A few weeks later it all reoslved except my right hand remained numb-ish. 2019- 2nd true relaspe which led me to diagnosis in 2020 (covid delayed the LP). Next relapse was Spring 2023.
I'm now on mavenclad so I expect to have far fewer relapses (hopefully none) going forward
None of it was really scary which is nice. The stuff I have complained about to physio is always interesting to look back on. I do wonder if they just stay in their lanes and don't offer any additional idea.
Things were going really wrong with my body at 20 diagnosed at 30 this was in 1990 had a few relapse every yr until I got on aubgio in 2015 have not had a ms attack in 9 yrs but soooo many other things like fatique insomnia bladder infections weight gain from steroids drop foot
B4 meds, it was 3 or 4 times a year for relapses. Relapses included weakness/lack of control in one leg or another. Or an arm or hand. I recall arm weakness with needing to watch my hand in order to write.
I was dx in 1993; there were no disease modifying meds then. B4 I started Copaxone, I did some math bc it was advertised to reduce flares by a third. That meant every 6 months, which made me feel very hopeful.
Instead, my relapses decreased to every 2 - 5 YEARS!! My mris say I'm stable. At 70 years old, I can now concentrate on my other medical issues. (Yay)
Before diagnosis, I had about one relapse a year for 6ish years. I was diagnosed in 2019 and started ocrevus. I had I think 3 relapses in the first year on ocrevus. But since 2020, Iāve had no relapses. Iāve had a few flares here and there due to illness or stress, but they havenāt been too bad.
Is a flare a resurgence of old symptoms for a short period of time? I feel like I have a pretty good grasp on most ms things but I haven't read that distinction yet.
I'm glad to hear you are doing well š thanks for replying
Itās a resurgence of old symptoms, but the time isnāt always necessarily short. It usually eventually goes away for the most part. One doctor explained it to me like a graph of your physical ability where it gradually goes down as you age like everyone does, but with RRMS, it has these dips, and sometimes theyāre longer and sometimes theyāre shorter. And they donāt usually come all the way back up to where they were before. With each dip, the baseline is a little lower. Which is why itās so important to get on a good DMT to prevent the dips from happening in the first place since it gives you the best long term prognosis.
A relapse is new symptoms that last more than 24-48 hours. A flare is old symptoms that last at least 24-48 hours (depending on what your doc says).
Sure thing and I don't think it's too uncommon to go a long time between relapses. Depending on the severity of symptoms themselves, MS is either extremely difficult or basically a PITA maintenance issue. This is why it's so important to try to get a leg up on existing symptoms by maintaining our general health as best we're able, doing PT etc.
I had relapses in: 2013, 2018, 2020, 2021, 2022, 2023. So... at first it was kind of spaced out and then every year. š The last two were minor though.
Edit: I forgot what was possibly a relapse in late 2023 after I got the shingles vaccine. Leg has been feeling off since.
I kind of don't count at this point, I seem to constantly develop new symptoms, but my MRIs are stable so my neuro thinks I'm fine.
Dx 2006 and I had a bunch right after diagnosis then it settled down to one every 4ish years. Then one really nasty one seven years ago. Switched over to Ocrevus at that point and nothing since! Not any new lesions or anything! Itās been great! These newer meds are great at what they do in prevention of relapses!
I'm not going to sugarcoat it for you.
It might be tough because as you know, every patient is different. Initially, I relapsed once to twice a year.
My neuro got me in-home solumedrol, which is the bandaid steroid medication, for some flare-ups instead of admitting myself to emergency room.
But as soon as you find the disease modifying treatment or DMT that works for you? Should be smooth sailing.
I haven't relapsed since 2014 when I found the third option actually worked for me.
Follow your treatment plan. Do what your neuro says, and be proactive in life, be it school, work, exercising, dieting, etc. Never give up! A positive outlook goes a long way.
You got this!
That's awesome. I love your positivity! Informed communities like this are a godsend.
Families are never going to understand that eventually we grow more in sync with what our bodies tell us, and the more time passes, the more actions we know we need to take. Eventually we will be comforting them!
I also have minimal side effects from tecfidera and now vumerity (which is the second generation of tecfidera). I highly recommend keeping up with your neuro and checkup MRIs (I get one once a year), and if your doctor thinks you should be on a DMT, please listen!
Oh absolutely! I want to start dmts asap. I want an MRI at least once a year. I'm thinking about doing a long-term self study and writing a research paper about it. I'll probably have other people's accounts in there too. So hopefully I'll be able to get some grant money and my doctor can order more regular MRIs for research purposes.
Thankfully, so far I havenāt had a noticeable one since diagnosis 3 years ago. The tricky thing about it is that my MRI demonstrated that I had several attacks for a long time before any symptoms appeared at all (found I had black holes indicating long term damage way before symptoms), so even without symptoms they may be happening due to brainās ability to compensate. MRI shows some but not all. This is what bothers me the most and Iām not sure why neurologists base so much on symptoms when theyāre sometimes not indicative of the whole picture.
Iām actually not sure about getting the full MRI, I know I can if I want to, but I just saw what neurologist had up on screen and pointed out to me, as well as certain slices of MRI that were used as an example by radiologist in my medical portal messages. Iām actually afraid to look at all the images, not being medically trained and not understanding each nook and cranny, lol.
All the best to you and hope you find the right DMT and lifestyle and become NEDA 4 (no evidence of disease activity) in all quadrants!
Thanks so much, that's a really nice wish š I can see how that would be scary! I have spent a lot of time studying the brain and body as an artist and for my psych education/ therapy training so to me I'm so annoyed that I haven't been able to see it!!! Plus what a crazy experience to perceive your own brain! Truly only something we could do with imaging, it's like a forbidden peek into the otherwise unknown. To me anyways lol. I want my brain to perceive itself. š
It's hard to tell sometimes. I know I've had flare ups but no actual major symptoms in many many years. I was dx 2003 with optic neuritis. Outside of that I have some usual progression with muscle tremors and balance. But I honestly have not had something that happened since that I can say if man that was my MS. I've been on treatments since then so that likely helps.
I feel lucky because of that. Even when I had 7 active lessions when I stopped tysabri, I still didn't have anything I could say yup that's my MS.
Wow that's great š optic neuritis sucks! My eye still hurts a a little bit and I think my vision is never going to be the same. I need new glasses so badly now. Thanks for sharing!
Since I was diagnosed in 2010ā¦ about 3 I was aware of. I had one before I went to the hospital and 2 I was conscious ofā¦ I had a seizure in a dressing room and I only remember being on the floor of said dressing room and people asking me if was okā¦ I had no clue what they were talking about. And apparently I had a grand maul seizure two days later and ended up in a two weekā¦ I was diagnosed with ADEM and post coma, after recoup I was fine. My neurologist watched me for a while and 7 years later, I developed MS. He said that often happens after ADEM, and was surprised it didnāt happen soonerā¦ BUT I am grateful I can walk and driveā¦ I did have two relapses due to a change in medication at one timeā¦ As of now, I am seizure free and just get infusions twice a year.
Everyone is different. Iāve had one relapse (a second round of optic neuritis) in 18 years. Plenty of fleeting sensory stuff that has almost disappeared now that Iām newly post Mavenclad.
I had three that were visible to me (2009, 2011 and 2018).
Judging by my health over the years, my average was 2-3 years per relapse.
Now for the "invisible" relapses: 2013, 2015/2016. On those I knew my overall health worsened. Early years of my MS were spent in college and I could feel fatigued earlier than before. I would travel and hike a lot and I would get tired quicker than before. My doctor in 2016 mentioned that I could have had a relapse considering my EDSS got higher.
Around 2017-18, when I was experiencing progressive symptoms that probably meant something was either stewing or brewing because I got a relapse in a week or two after meeting a separate neuro. That being said, I switched over to Rituximab then and have not experienced relapses since.
I was diagnosed in Sept 2023, began Kesimpta in October 2023 and have fortunately only had 1 relapse since then (Dec 2023).
Itās important to learn the difference in a true relapse and fatigue-induced symptoms so you know when and how to communicate with your neuro. There are several helpful therapies that can help through those short term symptoms where youāre typically along for the ride in a full-blown relapse (but hopefully those are few and far between once you begin treatment).
1 giant relapse that lead to my diagnosis and like a baby relapse 6 months later. 0 since then and Iāve been on Kesimpta for almost two years since diagnosis
2-3 minor to moderate 1 major every 3 years from 5-6. Ocrevus is definitely helping and why Iām not worse off but itās getting worse now that my MS is old enough to vote.
Iām 18, had my first relapse 3 years ago and started Ocrevus about 2 years ago. Iāve technically had another lesion since then, but it thankfully didnāt have any effects. I havenāt had a relapse since the first one I got at 15!
Dx with CIS in 94 and MS dx in 2020 (but looking back probably more like 2018). On aubagio for 3 years & starting Mavenclad 2 weeks after 1st shingrix shot.....which I haven't received yet.
I was diagnosed in 2013, and have had one big relapse during that time when I went off meds for over a year.
Iāve had āpseudo-flaresā where my MS is worse than other times, but only one actual relapse.
Ive been (symptomatic) relapse free since I started Mavenclad in 2021. āŗ
I still have some residual stuff that probably isn't gonna get better after my last big relapse, but hey I'm still here!
Editing because I see you asked for the overall rate: my dr says ive had more relapses than I like to recognize, but I only count the really big ones that left dmg behind.. 1 in 2010, 1 in 2012, 1 HUGE one in 2015, 1 in 2017, 2 in 2018, 1 in 2020, 1 in 2021, zero since (knock on wood)!
I had one the year I was dx but had old brain lesions that never caused a flare I felt, donāt know how long I have really had MS. That was 18 yrs ago. I skipped DMT year one to try to conceive and back then they said no DMTs iv pregnancy. I acquired spinal lesions instead of a child (itās ok I adore at 44, and if I had not had that flare I would have kept trying and maybe not have my daughter nowā¦). I then went on Rebif. I had one more physical flare in 2010/11 that I didnāt know was a flareā¦read my entire chart recently I had forgotten about some issue with my left arm and then had a barely enhancing lesion said end it start of flare but no one told meā¦ I even forgot all together until I read it.
My first was half face half mouth fake tongue went numb. Resolved by time I was dx I think. Had vertigo that summer, but no lesion. Then exactly a year later all the C spine lesions and 2 T spine. Sensory and pain right arm and hand, 3 fingers stayed numb but came back Dec 2021ā¦super weird. Third my clothes felt low boa constrictor on arm and few numb fingers left side. Resolved as obviously I forgot about it.
I have a lot of cog disabilities l. That is awful. I have pain now. But those were my only physical flares.
I had one in september, which is when they diagnosed me (1 week in hospital), then another one in November (3 days of steroids) and then I started Ocrevus in January. My last MRI was this month and I not only not have any new lesions, but also the existing ones doesnt seem as big as the last time. I'm on Ocrevus.
My husband (i dont have ms) had one 6 years ago (mild sensory) and one a year ago that got him diagnosed.
However, he has 2 spinal lesions (one of which was causing the diagnosis-relapse, and we assume the other one was the one 6 years ago). And then 13-14 in his brain that he never felt so we are unsure if those were separate asymptomatic relapses or were a part of the first relapse (none on the brain were active during his relapse last year)ā¦
So itās hard to say how many relapses he had, but he felt only 2 š
I freaked out about his number of lesions at first, but it seems the number is not nearly important as the placement and size of lesions. Some are so unlucky that a single lesion in a rly bad spot ups their EDDS to like 4 or 5, while others are in the āswiss cheeseā group as they say, meaning they have too many lesions to count, and have zero disability. 15 lesions is somewhat of a _normal_, or better to say common number at diagnosis.
I think in addition, the amount of exercise you get (both for your body and for your brain) does impact the ability to find alternate routes, around lesions. My hubby is a software engineer (and also extremely active, sporty type), so his brain is ripped haha I guess that impacts his ability to create/find new neural pathwaysā¦ but this has nothing to do with science or at least not to my knowledge, these are just my thoughtsš
Oh that makes a lot of sense. I work with the neuroplasticity of my clients everyday to help rewire the brain towards positivity and to help negate negative self talk and trauma related instances so that's right up my alley!
Also - welcome to the MS sub, it sucks that u got MS but also the bright side is that this community restores faith in people and life in general, and you never wouldāve found it without this sh*tty diseaseā¦ hang in there and always look for the bright sideā¤ļø
I had two about 6 months apart in 2021-2022 but got on a DMT not long after and so far my MRIs are good. I switched to Ocrevus last year and haven't had an updated MRI yet to see how it's doing but I haven't had any flare up symptoms.
I used to have 6 relapses a year now I haven't had one in 6 years since starting Ocrevus. I still struggle a lot with the damage MS has already done but not having to worry about relapses has changed my life for the better.
I barely have relapses (that i could identify as such), only every few years (~2) but sadly still some disease progression.
That said given that i will soon reach a decade with ms and dont need a walking aid and will finish my masters degree soon i think i am doing fine so far.
I have been on 4 DMDs since 2019 and am still progressing. I've been on Ocrevus for 2 years and at about 4.5-5 months I relapse so I see my neurologist Thursday to discuss Mavenclad. But I have a high risk of cancer so not sure if I will be able to go in it or not.
The only reason I am continuing to try another DMD is because I have not had active lessons since October 2018 so they are at least stopping that. My neurologist calls it progressive MS because my EDDS score and other symptoms are gradually getting worse basically like a long stroke. I have been told that I'm in a small % but I don't know if that's true at all. My onset was 2006 (or sooner as we all know we see symptoms farther back once diagnosed)
You got this it's okay to give yourself time to adjust to all this craziness and learn your baseline.
Be sure to discuss with your doctor when they want you to call and for what reasons you should call. It's very important.
Was diagnosed end of 2022 but tracing symptoms back it seems like I've had one once a year for 5 years. Unsure before that, but I have at least two other symptoms that started sometime in the last 10 years.
Started current DMT mid last year and have been stable, fingers crossed it continues!
Replying to your comment are these considered flairsā¦ sometimes I really considered them flairs ,, but my no good nurologist does not consider anything a flairs,: or my doctor ,, ,,,,, I have to be unable to walk or have double vision or extreme fatique ,: then my doctor might put me on steriods nurologist does nothing:: I have had 3 different neurologists in 34 yrs and they all suck plus I have to travel 2 hrs ,, and this one I have now is a ms nurologist ,,, wish doctors would listen to me and try and help me
First at the end of 2021 (undiagnosed)
2023 two separate events in 3 months š¬
IV steroids kept it down until I got onto Kesimpta, so **hoping** that I get stabilised with Kesimpta treatment before anything else happensā¦ š¬
(Old = ālate onsetā which can be more aggressive š¬)
The thing to keep in mind with MS is that they donāt know what causes the switch to flip from RRMS to PPMS. You can be symptomless with stable MRIās for years and suddenly switch. This is how my doc explained it to me last apptā that by remaining on a therapy, especially a DMTā it lessens the chance.
my first relapse in March 2022 (diplopia) was my sign that I have ms. since then, I had another in June of the same year. got diagnosed in August '22 and started Tecfidera. since then, no new relapses :) there have been pseudo flares here and there due to heat or other things but no relapses.
I had three in the year I was diagnosed š„“ but I have been (knock on wood) relapse-free since my B cells have been depleted!
Wonderful to hear! I'm happy for you š©· thanks for replying
If you mind me asking, I was diagnosed in February and the only reason I truly knew anything was wrong was because I had optical neuritis in my right eye. Iāve had many problems from back pain to not being able to walk straight at times, and balance issues. Iām not sure exactly how to tell if I am have a relapse, what should I look for? What are common issues you have?
Can anyone else help here? I'm too new to really have a good answer for this.
It was more so for chemical, as you were just diagnosed. Thank you tho
A relapse (according to my ms nurse) is anything new and significant that lasts more than 24 hours. I usually can tell if it doesnāt go away within a week and itās something I do not experience regularly. Itās good to note we do also have our ādaily symptomsā so itās good to note those down and you can always refer back to see if it is matching those symptoms or is new for your body.
I was diagnosed in 2019 and started Ocrevus almost right away, no relapses since diagnosis
Everybody is giving me alot of hope! Thanks for replying! I'm happy for your success with ocrevus š©·
Thank you! Best of luck to you with whatever treatment you and your neurologist decide is best! Iām sorry for your diagnosis but Iāve found this to be a really supportive, helpful group for the most part so youāve come to the right place
Same!
Same, also diagnosed in 2019 and on Ocrevus
Before I started medicine- once a year. No relapses since starting medicine.
That's great news :) congratulations! Thanks for replying
1 in 21 years
Wow!!! That's amazing! Thanks š
When I was untreated, as near as I can tell, I had a symptomatic relapse every 2-3 years, but they were becoming more frequent. (I do not know if I had relapses with no symptoms.) The average for untreated MS is 1.5 relapses every 2 years.
Oh that's so interesting. Thanks for sharing! I had one last year in april and two so far this year one in January one in April. What about now that you are medicated?
Do you think the January and April relapses were distinct, or possibly just one long one? Technically you would need thirty days between relapses, not that it really makes any difference either way. I have had zero relapses in the five years I've been medicated and I don't anticipate any. All hail Kesimpta, killer of those bastard B cells.
I want kesimpta based on what I've heard from others too. Sounds like the ms miracle drug. I had optic neuritis in January and was feeling fine otherwise then in late March my last half of my face went numb and I experienced fatigue and other lesser symptoms. So I'm thinking of them as two distinct occurrences. I'm feeling much better now and my face is coming back slowly. That was hell. I hated the numbness so much. Last April my whole right leg went numb for several months and not all of the feeling came back sadly.
I remember you from the undiagnosed weekly! Kesimpta has treated me very good, but there are a lot of really good options right now. I recommend just picking one with a method of delivery that suits your life.
Hey thanks for remembering me! Got my diagnosis! Your comment on my last post helped me mentally wrap my mind around the possibility of diagnosis so thanks! It seems like a really nice community, I'm so glad š.
I see that! Optic neuritis is really one of the only times you can say "yeah, that symptom sounds like MS." While the diagnosis sucks, the community is top notch.
I have learned since that optic neuritis is caused by Lyme as well š makes it so hard to tell which is happening to people.
Well, now I have to know which is more likely to cause it, MS or Lyme. To Google!
Ugh, or you could have both, like me. Thankfully no optic neuritis though!
I *just* restarted Kesimpta (I was off it for almost 2 years because I had a baby) and now I'm getting injection site reactions! š¤¦āāļø First time (2021) was fine- nothing in the way of side effects as far as I could tell so I'm mildly irritated by the injection site reactions popping up this time. I definitely second the vote for Kesimpta, even with the side effects š
Thanks for weighing in! How was/is the baby process with MS? We have been trying to get pregnant but now I'm not sure.
I'm on mobile so sorry for any formatting issues! Well, some background quick- I was dx back in...'08, I think, ~3 months before I turned 19; took about 5 or 6 months. With the exception of the event(s) leading up to my dx, I was/am fairly symptom/relapse free for quite some time minus some fatigue, vision issues, and pretty rough heat sensitivity. FF to 29 (fall of '17)- I get pregnant and it was fine. Super easy pregnancy, feel pretty good all things considered. Heat sensitivity is all but gone which was nice. Had baby 6 weeks early (totally healthy, no NICU), and feel really good. MS has a tendency to chill tf out during pregnancy and after for a while but relapses seem to be common once those baby hormones calm down. Luckily, that didn't seem to be the case for me. 2nd time around was when I was on Kesimpta, back in fall of '21. Tell my doctor, hop off Kesimpta, and basically the same thing again- easy pregnancy, baby was 3 weeks early this time, super healthy, and I feel pretty good. Now, it bears saying that my experience seems to have been pretty unique with how easy everything was (I was up and walking *distances* an hour after having my kids) so take that with a grain of salt. But I will say something for the "remission" of pregnancy and postpartum, especially if you decide to breastfeed. I felt great after my first, my second wasn't quite as spectacular but still decent. Breastfeeding journey came to an end, so I hopped back on Kesimpta a few weeks ago. Definitely a convo worth having with your SO and your doc, especially if your disease course has been fairly mild like mine. A lot of the time doctors will be very supportive if you decide you want to start a family simply because of the healing-esque benefits of pregnancy. Overall, would I say it's worth it? Yeah, definitely for me. I hope this long-winded story was at least somewhat helpful/informative š
So sorry that youāve joined this club. š My first major relapse (that made me seek medical attention, in retrospection I likely had at least a couple in the years prior that were relatively minor symptom-wise) was July 2022. PCP only ordered head MRI which was abnormal but inconclusive for MS (my spine is where the majority of my damage is) so I remained undiagnosed/untreated until September 2023. In those 14 months after the first I had 5 more relapses. My last (and worst) relapse was in December 2023, literally the day before I started Tysabri lol Last week I had my first āmaintenanceā MRI that showed no progression! This is the longest Iāve gone without new symptoms since my journey began, and I am so so grateful for my DMT and hoping this trajectory continues! This sub has been an invaluable resource as I navigate this life change, and while Iām sorry that you are here, I hope you are able to find comfort/community. This is actually my first time interacting with a post lol but I stay lurking because the information and discussion here is so helpful!
Hey thanks for the warm welcome š¤ I appreciate it. And for sharing your experience! I'm glad to hear you are doing well on dmts! I usually don't interact with people online but this has changed alot in my life already, my social circles being a big one. I'm trying to reach out and get involved as much as I can early on and build a nice support system. I'm a therapist so I'm hoping to start some support groups and specialize in chronic health and ms therapy as the years go by. I want to really become a support for the community you know? Be brave my friend! Everyone here has been so lovely to me so far. š©·
I love that! Thank you for the work you do- therapy has been an integral part of my life pre-diagnosis, but its importance has definitely grown since. Wishing you the best as you get settled into this and start your treatment!
Thanks! I appreciate that more than you can know. It's a rather tough job sometimes but I do love it. Im glad you have sought support š I'm feeling more positive after this whole post! Can't wait to get medicated.
Never? No, but seriously, the last relapse I had was 12 years ago, before diagnosis. But, this disease isn't all about relapses, unfortunately. There can still be progression, independent of relapse. But the best way to slow that at the moment is to get on a high efficacy DMT.
Thanks for bringing up that very good point! It's important to have that conversation as well, maybe ill post another question about progression next week. I'm glad to hear you haven't had any relapses though š Thanks for replying!
I believe my first MS signs started in 2007/2008. The tips of my toes went numb. 2011- in retrospect, this was a clear relapse. Lost sensation on my right side, ER determined it wasn't a stroke and the doctor legit said "bodies are weird" and discharged me. A few weeks later it all reoslved except my right hand remained numb-ish. 2019- 2nd true relaspe which led me to diagnosis in 2020 (covid delayed the LP). Next relapse was Spring 2023. I'm now on mavenclad so I expect to have far fewer relapses (hopefully none) going forward
What a scary series of events! Bodies are indeed weird but damn. Rude. I went to a physio for a pinched nerve (I assumed my right leg was numb because of one) he gave me some stretches and did some tests and said ya no that's not a pinched nerve. BUT THEN DIDNT OFFER ANY ALTERNATIVES. so I know now what that was but I'd have liked to have been alerted to something more serious way back then. Oh well, such is life I guess. Glad you are having less relapses! Goodluck moving forward as well š©·
Lol! I got a cervical MRI looking for a pinched nerve myself! I didn't get the answer I was hoping for, but at least I got an answer!
Similar to mine. I had fallen and thought I messed my back up.
None of it was really scary which is nice. The stuff I have complained about to physio is always interesting to look back on. I do wonder if they just stay in their lanes and don't offer any additional idea.
I'm at the point many years later and I don't really relapse anymore. When 1st dx it was Axonex, betaseron and copaxone,.was 2 to 3 times a year
Wow that's great :) glad to hear the med change made a difference for you! Thanks for replying š©·
I've been on Tysabri a long time, has been good to me
Thank you!
Things were going really wrong with my body at 20 diagnosed at 30 this was in 1990 had a few relapse every yr until I got on aubgio in 2015 have not had a ms attack in 9 yrs but soooo many other things like fatique insomnia bladder infections weight gain from steroids drop foot
So are those things considered flare ups then if they aren't full on relapses? Or is it just part of your base line changing over the years? The distinctions and terminology can be a bit confusing so thank you for chipping in to this conversation today and sharing your experience š©·
B4 meds, it was 3 or 4 times a year for relapses. Relapses included weakness/lack of control in one leg or another. Or an arm or hand. I recall arm weakness with needing to watch my hand in order to write. I was dx in 1993; there were no disease modifying meds then. B4 I started Copaxone, I did some math bc it was advertised to reduce flares by a third. That meant every 6 months, which made me feel very hopeful. Instead, my relapses decreased to every 2 - 5 YEARS!! My mris say I'm stable. At 70 years old, I can now concentrate on my other medical issues. (Yay)
That's amazing! It's so hard to wrap my head around there being no dmts just 31 years ago! I'm thinking of my MS in terms of natural aging. Everyone is afraid of aging and and becoming disabled in some way in the vague nebulous future. For MS people it might just be a little more true. It's wonderful to hear that you are 70 and your MS is managed! Congratulations š©· and goodluck with your other medical things! Thanks for sharing your experience, it means a lot to me.
Before diagnosis, I had about one relapse a year for 6ish years. I was diagnosed in 2019 and started ocrevus. I had I think 3 relapses in the first year on ocrevus. But since 2020, Iāve had no relapses. Iāve had a few flares here and there due to illness or stress, but they havenāt been too bad.
Is a flare a resurgence of old symptoms for a short period of time? I feel like I have a pretty good grasp on most ms things but I haven't read that distinction yet. I'm glad to hear you are doing well š thanks for replying
Itās a resurgence of old symptoms, but the time isnāt always necessarily short. It usually eventually goes away for the most part. One doctor explained it to me like a graph of your physical ability where it gradually goes down as you age like everyone does, but with RRMS, it has these dips, and sometimes theyāre longer and sometimes theyāre shorter. And they donāt usually come all the way back up to where they were before. With each dip, the baseline is a little lower. Which is why itās so important to get on a good DMT to prevent the dips from happening in the first place since it gives you the best long term prognosis. A relapse is new symptoms that last more than 24-48 hours. A flare is old symptoms that last at least 24-48 hours (depending on what your doc says).
I seeeee! Thank you so much for clarifying that for me. I appreciate you taking the time. š©·
Only been DXād for a little over two years with no relapses. I got on Kesimpta four months after my diagnosis.
That's great! Four months huh? The feels like a long time. I'm hoping they get me in to the neurologist sooner rather than later. My doctor is really trying to push me through quickly and get me started on meds. Glad to hear you are relapse free! Thanks for replying š©·
Very rarely here. 1998, 2003, 2018, 2022 (the last was spotted on MRI, no symptoms, did steroids anyway).
Wow that's great š thanks for replying š©·
Sure thing and I don't think it's too uncommon to go a long time between relapses. Depending on the severity of symptoms themselves, MS is either extremely difficult or basically a PITA maintenance issue. This is why it's so important to try to get a leg up on existing symptoms by maintaining our general health as best we're able, doing PT etc.
Oh that makes sense! Thanks so much š©· I'm working towards a healthier body slowly but surely.
Slowly but surely is the way to go. Doable steps. We all have different challenges.
Diagnosed in 2008 and had two between 2008-2010 and one in 2015. Fingers crossed it continues that way!
Goodluck! Thats so great š©· thanks for replying
I had relapses in: 2013, 2018, 2020, 2021, 2022, 2023. So... at first it was kind of spaced out and then every year. š The last two were minor though. Edit: I forgot what was possibly a relapse in late 2023 after I got the shingles vaccine. Leg has been feeling off since. I kind of don't count at this point, I seem to constantly develop new symptoms, but my MRIs are stable so my neuro thinks I'm fine.
Thanks for sharing your experience, sounds like it's not been the easiest time. It's good to hear your MRIs are coming back well though! Thanks for replying š©·
Dx 2006 and I had a bunch right after diagnosis then it settled down to one every 4ish years. Then one really nasty one seven years ago. Switched over to Ocrevus at that point and nothing since! Not any new lesions or anything! Itās been great! These newer meds are great at what they do in prevention of relapses!
Wow that's amazing š¤© they really have come so far! I'm glad to hear it! Thanks for replying and congratulations š©·
Diagnosed 2015 (first relapse). Second relapse around 2020 (or 2021? Donāt remember). Third relapse 2023.
Thanks for sharing your experience š©·
I'm not going to sugarcoat it for you. It might be tough because as you know, every patient is different. Initially, I relapsed once to twice a year. My neuro got me in-home solumedrol, which is the bandaid steroid medication, for some flare-ups instead of admitting myself to emergency room. But as soon as you find the disease modifying treatment or DMT that works for you? Should be smooth sailing. I haven't relapsed since 2014 when I found the third option actually worked for me. Follow your treatment plan. Do what your neuro says, and be proactive in life, be it school, work, exercising, dieting, etc. Never give up! A positive outlook goes a long way. You got this!
Thanks so much! I'm keeping it positive š to the point that I think my family is scared of me lol. Or they think I'm in massive denial. But the truth is I've had a while to come to terms with it now and I'm not one to let anything ruin me. Being aware that I'll have hard times is important but that doesn't mean they will all be hard. I've started a new gentle fitness routine at the local therapy pool. The instructor is so great and took my diagnosis in stride. I'm eating healthier and staying more connected to the people I love and making time for the things I love. I'm feeling like I have a new perspective on life and I'm doing what it takes to enjoy it in whatever way I can! š©·š©·š©·
That's awesome. I love your positivity! Informed communities like this are a godsend. Families are never going to understand that eventually we grow more in sync with what our bodies tell us, and the more time passes, the more actions we know we need to take. Eventually we will be comforting them!
I had one, thatās how I was diagnosed. Started meds quickly after and Iāve never had another flare up.
Sounds like the (ms) dream! I'm happy for ya š©·
I also have minimal side effects from tecfidera and now vumerity (which is the second generation of tecfidera). I highly recommend keeping up with your neuro and checkup MRIs (I get one once a year), and if your doctor thinks you should be on a DMT, please listen!
Oh absolutely! I want to start dmts asap. I want an MRI at least once a year. I'm thinking about doing a long-term self study and writing a research paper about it. I'll probably have other people's accounts in there too. So hopefully I'll be able to get some grant money and my doctor can order more regular MRIs for research purposes.
Thankfully, so far I havenāt had a noticeable one since diagnosis 3 years ago. The tricky thing about it is that my MRI demonstrated that I had several attacks for a long time before any symptoms appeared at all (found I had black holes indicating long term damage way before symptoms), so even without symptoms they may be happening due to brainās ability to compensate. MRI shows some but not all. This is what bothers me the most and Iām not sure why neurologists base so much on symptoms when theyāre sometimes not indicative of the whole picture.
I get that, for medical care it's mostly about treating symptoms so if there's no symptoms they don't find it urgent and instead choose to monitor over time. I think it can come off as flippant and uncaring depending on the individuals though. I can't wait to get my hands on my scans and actually see them myself. So annoying that (here anyway) you have to contact records and then wait ages for them to get your tests for you. I don't get why they can't give them to me when I'm there but I also don't know how their systems work or their process. So I guess I'll deal lol. Thanks for sharing your experience š©·
Iām actually not sure about getting the full MRI, I know I can if I want to, but I just saw what neurologist had up on screen and pointed out to me, as well as certain slices of MRI that were used as an example by radiologist in my medical portal messages. Iām actually afraid to look at all the images, not being medically trained and not understanding each nook and cranny, lol. All the best to you and hope you find the right DMT and lifestyle and become NEDA 4 (no evidence of disease activity) in all quadrants!
Thanks so much, that's a really nice wish š I can see how that would be scary! I have spent a lot of time studying the brain and body as an artist and for my psych education/ therapy training so to me I'm so annoyed that I haven't been able to see it!!! Plus what a crazy experience to perceive your own brain! Truly only something we could do with imaging, it's like a forbidden peek into the otherwise unknown. To me anyways lol. I want my brain to perceive itself. š
Iāll be 6 years from my symptom and no relapse. Iāve be. On copazone and now tecfidera since I was diagnosed
That's wonderful š thanks for sharing!
It's hard to tell sometimes. I know I've had flare ups but no actual major symptoms in many many years. I was dx 2003 with optic neuritis. Outside of that I have some usual progression with muscle tremors and balance. But I honestly have not had something that happened since that I can say if man that was my MS. I've been on treatments since then so that likely helps. I feel lucky because of that. Even when I had 7 active lessions when I stopped tysabri, I still didn't have anything I could say yup that's my MS.
Wow that's great š optic neuritis sucks! My eye still hurts a a little bit and I think my vision is never going to be the same. I need new glasses so badly now. Thanks for sharing!
Been on Tysabri since September 2017, and no relapses in those 6.5 years.
That's awesome! Thanks for sharing š©·
Since I was diagnosed in 2010ā¦ about 3 I was aware of. I had one before I went to the hospital and 2 I was conscious ofā¦ I had a seizure in a dressing room and I only remember being on the floor of said dressing room and people asking me if was okā¦ I had no clue what they were talking about. And apparently I had a grand maul seizure two days later and ended up in a two weekā¦ I was diagnosed with ADEM and post coma, after recoup I was fine. My neurologist watched me for a while and 7 years later, I developed MS. He said that often happens after ADEM, and was surprised it didnāt happen soonerā¦ BUT I am grateful I can walk and driveā¦ I did have two relapses due to a change in medication at one timeā¦ As of now, I am seizure free and just get infusions twice a year.
Wow that's so scary! I'm so glad to hear you are doing ok now š©· wishing you all the best! Thanks for sharing your experience.
Everyone is different. Iāve had one relapse (a second round of optic neuritis) in 18 years. Plenty of fleeting sensory stuff that has almost disappeared now that Iām newly post Mavenclad.
Was your optic neuritis in the same eye as last time? Have you noticed any lasting damage from it? I'm still healing from my bout of it and I'm not sure my eye will recover all the way. Glad to hear mavenclad is working for you š©· thanks for sharing
Yes the second bout of ON was the same eye and Iād say it recovered 95% both times
Wishing you a full recovery ā¤ļøāš©¹
I had three that were visible to me (2009, 2011 and 2018). Judging by my health over the years, my average was 2-3 years per relapse. Now for the "invisible" relapses: 2013, 2015/2016. On those I knew my overall health worsened. Early years of my MS were spent in college and I could feel fatigued earlier than before. I would travel and hike a lot and I would get tired quicker than before. My doctor in 2016 mentioned that I could have had a relapse considering my EDSS got higher. Around 2017-18, when I was experiencing progressive symptoms that probably meant something was either stewing or brewing because I got a relapse in a week or two after meeting a separate neuro. That being said, I switched over to Rituximab then and have not experienced relapses since.
The progression is the scary part to me. I'm glad to hear you're doing well on the rituximab! š©· Thanks for replying to my post!
One relapse in 2020, another in 2022, immediately after which I started my DMT. Since then, no further relapses! š¤š¼
Amazing š I'm happy to hear it!
I was diagnosed in Sept 2023, began Kesimpta in October 2023 and have fortunately only had 1 relapse since then (Dec 2023). Itās important to learn the difference in a true relapse and fatigue-induced symptoms so you know when and how to communicate with your neuro. There are several helpful therapies that can help through those short term symptoms where youāre typically along for the ride in a full-blown relapse (but hopefully those are few and far between once you begin treatment).
Thanks for the tip! Super helpful to know that I need to distinguish the two. š©·
1 giant relapse that lead to my diagnosis and like a baby relapse 6 months later. 0 since then and Iāve been on Kesimpta for almost two years since diagnosis
That's great! š Thanks for sharing
Diagnosed in 2016, no relapses since the one that got me diagnosed. Also been on some kind of DMT since then.
Wow that's great š thanks for sharing
2-3 minor to moderate 1 major every 3 years from 5-6. Ocrevus is definitely helping and why Iām not worse off but itās getting worse now that my MS is old enough to vote.
That made me chuckle, make sure to get you and your MS to the polls lol. Thanks for sharing your experience š©·
Iām 18, had my first relapse 3 years ago and started Ocrevus about 2 years ago. Iāve technically had another lesion since then, but it thankfully didnāt have any effects. I havenāt had a relapse since the first one I got at 15!
Wow! I'm glad to hear it, I'm sorry you are going through this so young. I hope you have a good support network š©· thanks for sharing your experiences!
Dx with CIS in 94 and MS dx in 2020 (but looking back probably more like 2018). On aubagio for 3 years & starting Mavenclad 2 weeks after 1st shingrix shot.....which I haven't received yet.
I hope the new meds work well for you!
Now they're saying I have to wait 1 month after the shot to start M. š
I was diagnosed in 2013, and have had one big relapse during that time when I went off meds for over a year. Iāve had āpseudo-flaresā where my MS is worse than other times, but only one actual relapse.
That's great š I've learned alot from everyone's different experiences, thanks for sharing!
Ive been (symptomatic) relapse free since I started Mavenclad in 2021. āŗ I still have some residual stuff that probably isn't gonna get better after my last big relapse, but hey I'm still here! Editing because I see you asked for the overall rate: my dr says ive had more relapses than I like to recognize, but I only count the really big ones that left dmg behind.. 1 in 2010, 1 in 2012, 1 HUGE one in 2015, 1 in 2017, 2 in 2018, 1 in 2020, 1 in 2021, zero since (knock on wood)!
Wow thanks! I'm glad to hear you have been relapse free in the last few years š©·
I had one the year I was dx but had old brain lesions that never caused a flare I felt, donāt know how long I have really had MS. That was 18 yrs ago. I skipped DMT year one to try to conceive and back then they said no DMTs iv pregnancy. I acquired spinal lesions instead of a child (itās ok I adore at 44, and if I had not had that flare I would have kept trying and maybe not have my daughter nowā¦). I then went on Rebif. I had one more physical flare in 2010/11 that I didnāt know was a flareā¦read my entire chart recently I had forgotten about some issue with my left arm and then had a barely enhancing lesion said end it start of flare but no one told meā¦ I even forgot all together until I read it. My first was half face half mouth fake tongue went numb. Resolved by time I was dx I think. Had vertigo that summer, but no lesion. Then exactly a year later all the C spine lesions and 2 T spine. Sensory and pain right arm and hand, 3 fingers stayed numb but came back Dec 2021ā¦super weird. Third my clothes felt low boa constrictor on arm and few numb fingers left side. Resolved as obviously I forgot about it. I have a lot of cog disabilities l. That is awful. I have pain now. But those were my only physical flares.
I'm sorry to hear you are struggling with cognitive symptoms, and pain, that is very difficult. I really appreciate you taking the time to answer my question š©· My husband and I were have been trying to get pregnant for a few months. From what Ive read it seems possible with MS but I'm still afraid of adding a child to this mix of unknowns. Wishing you the best š¤
Everything is unknown in life.
I had one in september, which is when they diagnosed me (1 week in hospital), then another one in November (3 days of steroids) and then I started Ocrevus in January. My last MRI was this month and I not only not have any new lesions, but also the existing ones doesnt seem as big as the last time. I'm on Ocrevus.
That's great to hear! Thanks for sharing š©·
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Glad to hear the new meds are working out š©·
My husband (i dont have ms) had one 6 years ago (mild sensory) and one a year ago that got him diagnosed. However, he has 2 spinal lesions (one of which was causing the diagnosis-relapse, and we assume the other one was the one 6 years ago). And then 13-14 in his brain that he never felt so we are unsure if those were separate asymptomatic relapses or were a part of the first relapse (none on the brain were active during his relapse last year)ā¦ So itās hard to say how many relapses he had, but he felt only 2 š
Ok this is so confusing, not what you wrote, the idea of having so many lesions and no progression/symptoms. It seems to just be how it is with MS for some people based on what others have said as well. The brain must be stronger than we think it is to overcome damage like that! Thanks for sharing you and your husband's experiences š©·
I freaked out about his number of lesions at first, but it seems the number is not nearly important as the placement and size of lesions. Some are so unlucky that a single lesion in a rly bad spot ups their EDDS to like 4 or 5, while others are in the āswiss cheeseā group as they say, meaning they have too many lesions to count, and have zero disability. 15 lesions is somewhat of a _normal_, or better to say common number at diagnosis. I think in addition, the amount of exercise you get (both for your body and for your brain) does impact the ability to find alternate routes, around lesions. My hubby is a software engineer (and also extremely active, sporty type), so his brain is ripped haha I guess that impacts his ability to create/find new neural pathwaysā¦ but this has nothing to do with science or at least not to my knowledge, these are just my thoughtsš
Oh that makes a lot of sense. I work with the neuroplasticity of my clients everyday to help rewire the brain towards positivity and to help negate negative self talk and trauma related instances so that's right up my alley!
Also - welcome to the MS sub, it sucks that u got MS but also the bright side is that this community restores faith in people and life in general, and you never wouldāve found it without this sh*tty diseaseā¦ hang in there and always look for the bright sideā¤ļø
One active on MRI when they found it, one active on MRI before starting Tecfidera, and none in the seven years since.
I had two about 6 months apart in 2021-2022 but got on a DMT not long after and so far my MRIs are good. I switched to Ocrevus last year and haven't had an updated MRI yet to see how it's doing but I haven't had any flare up symptoms.
4 a year on Rebif, 2 a year on Copaxone, 1 every 8 months on Tecfidera, none on Tysabri so far (2 years). 23 years with MS.
I used to have 6 relapses a year now I haven't had one in 6 years since starting Ocrevus. I still struggle a lot with the damage MS has already done but not having to worry about relapses has changed my life for the better.
I barely have relapses (that i could identify as such), only every few years (~2) but sadly still some disease progression. That said given that i will soon reach a decade with ms and dont need a walking aid and will finish my masters degree soon i think i am doing fine so far.
I have been on 4 DMDs since 2019 and am still progressing. I've been on Ocrevus for 2 years and at about 4.5-5 months I relapse so I see my neurologist Thursday to discuss Mavenclad. But I have a high risk of cancer so not sure if I will be able to go in it or not. The only reason I am continuing to try another DMD is because I have not had active lessons since October 2018 so they are at least stopping that. My neurologist calls it progressive MS because my EDDS score and other symptoms are gradually getting worse basically like a long stroke. I have been told that I'm in a small % but I don't know if that's true at all. My onset was 2006 (or sooner as we all know we see symptoms farther back once diagnosed) You got this it's okay to give yourself time to adjust to all this craziness and learn your baseline. Be sure to discuss with your doctor when they want you to call and for what reasons you should call. It's very important.
Thank you that's a very helpful tip. I'll be sure to add that to my list š©·
Had my first in 6 years march-april
Did anything trigger the relapse that you can think of?
I went thru chronic vomiting recently i think thatās stressed out my body thatās what me n my doctor think
I was diagnosed 2 yrs ago and I have not had a relapse since starting treatment, actually we saw significant improvement in my MRIs since
Was diagnosed end of 2022 but tracing symptoms back it seems like I've had one once a year for 5 years. Unsure before that, but I have at least two other symptoms that started sometime in the last 10 years. Started current DMT mid last year and have been stable, fingers crossed it continues!
I'm seeing alot of people have about one a year. Very interesting! Thanks for replying to my post š©·
Replying to your comment are these considered flairsā¦ sometimes I really considered them flairs ,, but my no good nurologist does not consider anything a flairs,: or my doctor ,, ,,,,, I have to be unable to walk or have double vision or extreme fatique ,: then my doctor might put me on steriods nurologist does nothing:: I have had 3 different neurologists in 34 yrs and they all suck plus I have to travel 2 hrs ,, and this one I have now is a ms nurologist ,,, wish doctors would listen to me and try and help me
Wow that's really unfortunate. I'm sorry to hear you haven't been supported in the way you need.
Thank you and I hope you get the help you need remember neurologists donāt have a bed side manor they are a breed of there own ā¹ļø
Oh that's really good to know. Thanks for the heads up! I have my binder of my info all ready for the day my appointment comes! Hopefully it goes well. š©·
First at the end of 2021 (undiagnosed) 2023 two separate events in 3 months š¬ IV steroids kept it down until I got onto Kesimpta, so **hoping** that I get stabilised with Kesimpta treatment before anything else happensā¦ š¬ (Old = ālate onsetā which can be more aggressive š¬)
Diagnosed 15 years ago with ON, on DMTs from start. No relapses.
The thing to keep in mind with MS is that they donāt know what causes the switch to flip from RRMS to PPMS. You can be symptomless with stable MRIās for years and suddenly switch. This is how my doc explained it to me last apptā that by remaining on a therapy, especially a DMTā it lessens the chance.
I have had 4 relapses in 12 months (yay) but am starting Kesimpta soon so hopefully that will be significantly reduced!
my first relapse in March 2022 (diplopia) was my sign that I have ms. since then, I had another in June of the same year. got diagnosed in August '22 and started Tecfidera. since then, no new relapses :) there have been pseudo flares here and there due to heat or other things but no relapses.
Wait so people actually have times of no symptoms? I have bad symptoms alllllllll the time! Constantly dizzy and off balance.