Hello, my name is Yann, I’m 35 years old and I’m from France. I’m using my limited English and an AI to translate, so please be indulgent.

I have multiple sclerosis, and it’s really hard to live with. I’m not here to complain, but to help my fellow sufferers — to help people who are going through the same thing as me.

I’ve always been a free-thinking, independent, and rebellious person. I never fit into the mold, even when I was in the military or a firefighter (I’m also autistic with Asperger’s and have an IQ of 142. i mention my IQ to tell you im not retarded bcs of autism, and to explain why i try so many different things and why i do it my own way, not to tell you im a genius and you have to do what i say). When someone tells me not to do something, I’ll do it just to see what happens. I’ve also tried a huge number of molecules and practices to try to reduce my suffering.

1) Fatigue:

Multiple sclerosis is almost always accompanied by fatigue. Not the kind where you just feel like sleeping. No, it’s an overwhelming, exhausting fatigue. You have to kick yourself in the ass to get up and start your day. You have to fight against yourself constantly just to have a “normal” life.

Personally, when I wake up, I’m so tired! On top of that, it comes with general malaise, dizziness, tinnitus...

I think this might be the most disabling symptom in my opinion — much more than the pain or spasticity.

• Tramadol. i take 300mg evry morning, and i can start my day when the effect kicks in.
• Gabapentin. It works, but I feel like I’m in a fog. I don’t tolerate the side effects well.

2) Spasticity:

Not everyone with multiple sclerosis has spasticity, but I do. Again, I’ve tried a lot of things for spasticity, and here’s what works for me:

• Cannabis: Honestly, it’s the most effective. I roll joints, I buy legal CBD weed in France and street hash (I found a good supplier, not cut, static sift). Nothing relaxes me more than a good fat joint. I take a few puffs, then put it out. I do this throughout the day and I completely forget I have multiple sclerosis. No more neck stiffness, leg pain, less clonus, etc.
• Tramadol. When I don’t take tramadol, I feel much stiffer all over my body, especially in the neck and legs. Once the tramadol kicks in, it decreases greatly.
• Sport. Exercise helps enormously. After a run, a long walk with my dogs, or a weightlifting session, I feel much better. The endorphins from physical activity play a role, but I feel it in my muscles — I have more range of motion, less pain, less stiffness.
• Stretching. When I feel my legs or neck stiff, I do series of head movements and leg stretches. I can’t explain the exact movements, but I recommend seeing a physiotherapist who is trained and experienced with multiple sclerosis.
• Massages. I just came back from Thailand, and I can tell you that getting a full-body massage from a Thai masseuse puts you back on your feet. You feel so much better — it’s incredible.
• Gabapentin is effective because it treats the problem at the source, but I don’t tolerate this medication well, so I keep it for when things are really bad.
• Alprazolam / Xanax. It works very well, but you have to be careful because it’s more addictive than the others. I take Xanax before bed, otherwise I can’t do anything during the day. I can’t drive or do any manual or physical activity — I’m impaired even though the effect feels very pleasant.

3) Neuropathic pain:

I hope the people reading this post don’t suffer from this, because it’s terrible. I’m a former soldier and firefighter, used to suffering and digging into my last reserves of strength, but I once cried from the pain. Constant crushing and fracturing pain in my feet — a real nightmare. Once again, here are my tips:

• Tramadol. Strangely, tramadol works less well for neuropathic pain than for the other symptoms listed above, but it still helps.
• Lamaline. It’s a mix of opium, caffeine, and paracetamol. It works extremely well for me.
• Cannabis. When the pain is too strong, I try to find an indica strain or hash made from indica weed, and it works. I forget that I’m in pain — no more feeling of needles in my toes or burning sensations.

4) Restless legs syndrome / Insomnia

It’s unbearable to toss and turn in bed without being able to sleep. You can die from it…

• Tramadol. I think this is the case where tramadol works the best. As I often say, it’s like an “on/off” switch. When I take tramadol, the symptoms disappear completely. Nothing at all — I sleep like a baby.
• Gabapentin. It also works very well, but you need to take a lot and I don’t like the side effects.
• Cannabis: It works really, really well for insomnia, and a bit for restless legs (less than the other two, but it still works). It can be a supplement or a replacement depending on the person.
• Alprazolam / Xanax. It also works extremely well. It relaxes my muscles, I feel clumsy and tired, and I go straight to bed as soon as it kicks in.

5) Other tips:

• Video games. Thanks to competitive online gaming, I get so focused on the game that I forget my pain.
• Sun / Vitamin D supplements to avoid deficiencies, especially in winter.
• Cutting ties with toxic people. I’m an emotional sponge, and hearing people complain all the time when their life isn’t even that bad destroys me mentally, and it affects my health.

That’s it. Feel free to react, give me other advice, ask questions, or share your opinion.

On day 3 after my first shot of Kesimpta I felt the best I have felt in years. Although the first two days I had flu-like symptoms that third day I had tons of energy, focus and motivation. This feeling continued through the first four shots.

I'm now 2 days away from my next dose (where I had to wait the full month) and I am so tired. I was exhausted yesterday and still today. It's not quite as bad as before, where I was needing naps most days, but I certainly don't feel like doing much more than sitting on the couch.

My fatigue could be coincidental timing for me right now, but crap gap is a known phenomenon where MS symptoms like brain fog and fatigue can worsen for some people before their next dose.

So I guess my question is: why do so many refute that the medications can help improve symptoms for some people, even though they acknowledge symptoms can worsen/return between treatments?

So i’ve been a remote worker since before my diagnosis. So i’ve found my little routines and things that work for me on days when i’m not feeling so great. my job recently announced they are expecting us to be back in the office 4 days a week starting in a few months and i’m honestly wondering what to do here.

i have not disclosed my diagnosis to anyone at work since it neither seemed necessary or required and i have reservations about doing so. i’m unsure if it could help or hurt me, i don’t want it to be used against me in some way or expose me to any unnecessary vulnerabilities.

does anyone have any experience with this scenario or advice to share?

35 year old. White male. Non smoker. Non drinker. In great shape not sure if these matter or not.

3 weeks ago I had what I thought was a stroke. Had a full workup diagnosed with hemiplegic migraine. I did an MRI a week later and there was a lesion ended up in er again with opitcal neuritis.

The Neuro team initially including the attending basically said you have Ms.

during my stay they did a spinal tap-negative for bands

I was slightly positive with mog something 1.2 interval

spine was lesiom free.

I personally thought I had a stroke they said that was"unlikely".

I had my follow up Neuro last week and they said they're leaning toward monophasic something. Why is everything so vague? I read that bands are present in like 90% of patients combined with a clean spinal MRI does that mean I don't have Ms? Follow MRI in 3 months 🤢.

sorry for the ramble I'm just freaked out this is the worst two weeks of my life.

That’s all. Just sucks that my sleep and temp can be fine, and I’m relaxing, but the “good stress” of traveling and vacation have whooped my butt to where all I want to do is nap… but the napping isn’t restorative. Screw MS.

Does anyone have occasional fluttering inside their ear? It's always the same ear, fast (so not my pulse) and lasts for a few seconds.

I'm trying to decide whether to mention it to my MS nurse or just ignore it (it's only a minor annoyance).

Hi Everyone! Hope you're all having a good day

Im looking for hospitals/doctors with experience in managing MS patients on Ocrevus

(I'm a patient who already has Type 1 Diabetes, and is about to start a DMT)

Kindly share your experiences, + suggest hospitals & doctors in Pune or Delhi.

Would appreciate if you could share this.

I hate radiology so much . My yearly mri results came back . I KNOW i have multiple lesions in c3-c4-c5-c6-c7 since diagnosis . Last year they gave me a false report and my spine mri looked lesion free lol . My doctor said this mri reports are external service and they are usually bad . He said i still have the lesions but everything is stable . This year i had an mri again everything is stable except cervical spine . It days that i have new c3-c4-c5-c6-c7 lesions and there were no lesions in that area before so they must bu new . Wtf are you talking about i have lesions in that area since diagnosis (3 years!!) i dont know if i have something new but i can say this mri report was bullshit so i cant be sad about the cervical spine but also cant be happy about thorocal or brain . Cause it looks like someone looked the mri with their ass instead of eyes. Now i have to wait next week for my neuro appointment. Rant is over….

A killer! But being done!

Hello all, I’m 30m my best friend 30f got diagnosed last week. She went to check up after small numbness in her arm and headache and after 2 MRIs they told her it’s MS, she still needs to go to doctor so they take more samples and provide proper therapy.

She is trying to not show much emotions or says that it does not affect but I can see otherwise. The last few days she is staying more at home and took a couple of days off work.

This is a person that was next me when i heard a shitty diagnosis. I also need to be on lifelong therapy for my condition so I’m trying to explain that this is not so scary and not that strange these days. I know nothing about MS beside first page of Google results. I genuinely wanted to ask what will be a good to cheer her up? She is not in any pain or anything, but I’m not sure if suggesting physical activities is good idea. Also sharing any similar stories I think might help her realise she still can live normal life.

..and it is kicking my ass! Because of the advice of you lovely people, I took a tylenol and benedryl 1 hour before the shot, and I took the shot before bed. Last night was fine, got a headache, but not terrible. Today I am exhausted! In fairness, I walked my dog for 2 miles this morning, but I can barely walk now. Thank goodness I work from home, and I have a fold out couch in my home office which I am lying on right now. Laptop will be next to me with my glass of water and I plan to nap all day, answer emails and work when I need to. I hope this improves as my body gets accustomed to the meds. What we go through with this damned disease!

Im 11 years in on dx (100% sure I was dealing with this monster 10 years prior) and 11 years in on Copaxone, Glatopa, Glaterimer. Im running out of spots to inject. Im hitting more nerves. I am stable(lol hate that word) and have not had new lesions for 7 years. I asked my doc and she said she does not want to try anything new, explained why and I understand. Also had no advice on my shot issues. Anyone where I am at/have been at and what did you do. Im really stuck here.lol see how I did that?

Hey everyone, I got diagnosed in Feb of this year and had my first half dose of Ocrevus in May and second half in June. It'll be full dose every 6 months after this now. I got sick in May shortly after my first dose so my second one got delayed a bit into June and now im sick again as of 2 weeks ago. I used to rarely get sick, maybe once every year sometimes a bit longer and the symptoms were never that bad or lasted that long. Now I've been sick twice in two months and both times I got rocked. I understand it's because my immune system is weaker now but man this truly SUCKS. In May the symptoms were horrid but it lasted a normal amount of time. This time I've had a sore throat so bad that it hurts like the worst pain ever to swallow even my own saliva. It's like my throat is swollen and a raw wound at once. It started last Sunday night, I'm on day 11 now and it's hardly improved, almost as bad as day one. At night it gets worse and I cant sleep more than 4-5 hours a night at this point because of the coughing fits. The doctors all say its viral so I'm SOL and have to wait for it to go away on its own. Has anyone else had infections that last way longer than normal before improving? Is this a new norm I have to learn to accept now living with MS on ocrevus? Or is this out of the ordinary still? Thank you

Hi everyone,
I’m looking for some reassurance, or maybe just to hear from people who understand.
I have relapsing-remitting MS and ever since my diagnosis, I feel like I’m constantly waiting for my body to punish me if I enjoy myself too much.
I’m supposed to be going to Shambhala this year, and instead of being excited, I’m terrified. My brain keeps telling me that if I dance in the forest, laugh with my friends, or just have an amazing weekend, I’ll end up triggering a relapse.
I have numbness pretty much all the time, so every little sensation makes me wonder if I’m making my MS worse.
I’m trying to be as responsible as I possibly can:
I’ll only dance at night when it’s cooler.
During the day I’ll be in the cold river or relaxing in the shade.
I’m bringing ice packs and a UV umbrella.
I’ll drink lots of water and electrolytes.
I’ll eat well.
I get an infusion every six months and I’m on medication for nerve pain.
But despite all of that, I can’t shake this feeling that I’m somehow “not allowed” to have fun anymore.
Part of me even thinks I should stay home forever, never exercise, never dance, never do anything physically demanding because I’m so afraid of relapsing.
I also know there will likely be recreational drugs around. I might be tempted to do a small amount of ketamine, but even thinking about it makes me worry that I’m gambling with my health. (I’m not looking for judgment—just wondering if anyone has navigated similar fears.)
Has anyone else developed this mindset after being diagnosed? How do you tell the difference between being cautious and letting fear completely take over your life?
I’d really appreciate hearing from people who have gone to festivals, concerts, or other physically demanding events with MS. Did you regret it? Were you okay? How do you cope with the fear that enjoying your life will somehow come back to haunt you?
Thank you for reading. ❤️

Little backstreet. I (M37) was diagnosed December 2026 after optic neuritis in Nov 2026. Started Briumvi and everything g was looking great...until memorial day.

ON came back with a vengeance in both eyes, making my right eye so blind it was seeing motion only. Spent 25 days at Emory Hospital with 10 rounds of Plasma Exchange and was released. Eyes are better(ish) now. Anywho saw my MS Specialist Monday and he wants to change me from Briumvi to Tysabri dor 6 months. But because I'm an overachiever i have JCV antibodies.

So now im sitting here playing the ole "Your gonna get PML and die" game in my head. But my wife is a worry-wort so on the outside Im telling her it'll all be OK...I just wanna sit in the corner and eat trash food and have someone remind me that it'll be OK too....

Thanks for attending my rant

Quick question - my doctor asked me to choose a DMT

OCREVUS OR briumvi

I am 37M, based out of Chicago; reading up about both of them; I happen to find alot of people with lots of reactions or infections while getting their first dose.

what’s life after a DMT; how do you feel? I am someone who easily falls sick with a cold, or gets a seasonal allergy with a DMT life’s going to be fucked!?

Will I lose my hair?

I feel I am relatively ok right now, I can swim I can go for a walk, will I be able to do this?

Original Post: https://www.reddit.com/r/MultipleSclerosis/s/aJ6ln4GURf

Update: https://www.reddit.com/r/MultipleSclerosis/s/tvyAWNMrgC

Update 2: https://www.reddit.com/r/MultipleSclerosis/s/32gL3Li6fr

Update 3: https://www.reddit.com/r/MultipleSclerosis/s/rFs6TT2GeL

Update 4: https://www.reddit.com/r/MultipleSclerosis/s/WaKdex4Ely

I finished my pipe 307 trial over a year ago now and I have finally got my results from the trial since it was unblinded. I was told by my doctor that I was on the actual meds but that there seems to be no change in my lesions, although no progression either.

I think I did notice that my vision got better since taking it since I used to have blurry vision while driving a lot and now its a lot rarer and less severe. I also notice that some colors seem to "pop" more than others.

Overall I would say I really enjoyed my clinical trial experience and I am actually planning on participating in the trial where I will switch from Ocrevus to Briumvi and they will study the difference to see if I have better results with the new infusion instead. I can actually switch without doing the clinical trial aspect but i enjoyed doing this one so I decided to participate! If you guys would like me to give updates on that trial as well I would be more than happy to do so!

I really don't have much else to say, Thank you all for helping me with this trial throughout my time and if you have any questions feel free to ask!

Hi all!

I could use some feedback from others with MS regarding some life decisions that I am making. I was diagnosed 11 years ago and I'm now in my mid-30s. My husband and I have always felt that we would be fine with/without kids and would see how my disease progressed before making decisions. We eventually decided that we wanted to at least try for a baby. I spent 2024 tapering off Gabapentin and preparing to switch to a lower efficacy drug (Tecfidera to Copaxone) that would be safe while trying to conceive. This was daunting for me after many years of stability on Tecfidera, and having Gabapentin for nerve pain treatment since diagnosis.

I’m now at this point where I’m getting very tired of being off of my nerve pain treatment (for over 2 years) and I don’t want to stay on Copaxone forever. My neurologist was hopeful that pregnancy would happen faster so that I wouldn't have to be off meds for so long. We had one pregnancy after about six months of trying, but it ended in miscarriage. We've done fertility testing to ensure that there aren’t any major issues preventing pregnancy. If didn't have MS, I would probably leave things open-ended, and say "if it happens, it happens". The reality is that I’m going to have to call it and some point in order to resume my treatments, which is tough.

I’m curious if any others have had to go through this, or had similar experiences with life decisions about pregnancy/family related to MS. Also totally open to hearing from people who did not end up having children. Any feedback is appreciated, because these life decisions are very nuanced with MS!

https://www.nationalmssociety.org/news-and-magazine/news/twin-study-gut-bacteria

Hey guys,

I’m just starting tecfidera (literally took my first dose last night 120x1) and a couple hours later I felt cramps in my stomach and felt a bit nauseous

It lasted for maybe half an hour then I managed to go back to sleep

I’ve had dinner with proteins, no alcohol or acidic or hot drinks afterwards

For those of you who remeber how it started for yous, did you get some digestive symptoms that got better overtime ?

Im afraid since its intense on 120 how am I going to tolerate 240mg x2 per day 😭😭😭

—- Side note, for those of you who are curious, I’m in France - the generic here is largely prescribed since 1-2 years, almost impossible to get the real Tecfidera The generic for a monthly treatment is 700€ (nothing out of pocket when you’re on social security), Tecfidera is double the price which is why they don’t give it anymore unless medically necessary

Does anyone else experience a horse voice (but no pain or irritation) with flares? 3x I've had this hoarse voice during a flare now and wondering if it's related.

Just curious what hobbies people engage in even if it wasnt necessarily impacted by MS

Just got the devastating news that my neurologist, Dr. Osterbauer has suddenly and permanently closed his clinic due to health issues. I’m deeply saddened by the news, he helped me more than any other neurologist I’ve worked with. The loss leaves me in a trying position; I just started the first does of the second year of Mavenclad. His office made referral suggestions but connecting with a new neurologist in the middle of my treatment is a challenge; because of my age and length of time I’ve had MS. other neurologists have “written” me off as too old, too sick….. Mavenclad has improved my condition dramatically. I am in a mini remission☺️. Dr. Osterbauer saw me and prescribed options that will improve my quality of life. Just wanted to share my loss and my hopes with this group. AnnaR907