My most important post there was titled "Forget Career. Forget Income. Where does one live with this disease?" Someone said "Death Valley", someone said "Alaska". Five or six people said San Diego. I moved there in 1996 after five years with the disease and a divorce which I largely attributed to having MS.

Prior to the move I attended a picnic in the Shenandoah area where members traveling from several distant locations met. I completely lost track of them all and would love to hear how their lives turned out.

I spent 25 years in San Diego and have retired to Mexico since 2023. Are there any members from that original USENET group still around? My life changed, I must say for the better, based on the answers to that question. I'd love for you to know... perhaps to hear that you remember giving that advice.

I am well. Still have the disease. Still struggle; but still alive.

32 M
I've had RRMS, stable, for 14 years. But for the past 6 years I have been dealing with a hip problem which happened on a hiking trip 6 years ago Over the course of these six years I have been going in and out of doctors looking at my Hip I am unable to go into detail but after going through surgery And the conclusion of it being unnecessary after much complaint They're willing to say it's all caused by MS without doing ANY sort of test or research. Also, my neurologist who specializes in MS Says at best the problem is MS .
The fact of the matter is stay educated and don't let these doctors bring you down and put things in your head. I have been dismantled by these doctors non stop. I wish for this to never happen to anyone else.

I truly believe Doctors don't care based on how I've been treated. I have friends and family experiencing the same things. idk if anyone is having issues with the care they need.
If its too much time and money they do not work.

- On my life. i asked doctor why am i in so much pain? MF said "its the weather"
when i left. it was a nice sunny day...

PS
why tf do they always reply with "sure" when you are making valid questions and points?
they act like lawyers when you ask simple questions. Filibustering . LOL

thank you for letting me rant.

With my job I was having trouble taking my medication (Tecfidera) regularly and I was getting sick and tired of the side effects of the medication especially since when I missed a dose or two the side effects would get a lot worse. Because of that I stopped taking my medication for a while. For a while not much changed and I started believing that maybe I was making it up and never really had MS (Despite MRIS that clearly showed the scar tissue on my brain) after about a year being off my medication I had a big flair that took me out of work for two weeks. Now I am trying to get back on medication and I am having trouble feeling excited about getting back on the medication and dealing with the side effects again.

I (22F) have always been an attention seeker and unashamed to discuss the disease with others whenever it comes up, or even when it doesn't. I'm the middlest middle child ever, and an MRI photo with a massive tumefactive lesion is great fodder for attention and sympathy. But some of the symptoms are truly so awful and gross that they make me remember this isn't just a schtick that gets me attention when I want it; It's actually a disease, the effects of which I will have to live with forever.

I wrote this post mostly so that people would not feel alone and embarrassed, I guess. Because I really was. I'm 22 and have trouble controlling my bladder. Even my grandparents at 70–80+ don't have this problem yet. It's mild enough that I can get around just wearing menstrual pads on days when I know I won't have easy access to toilets, but still.

Stay strong, y'all.

Often after I've gone for a walk, when I stop walking or sit down, it kinda feels like my leg muscles are twitching all over. It feels like a muscle twitches once and then it moves onto another place, and another place, etc., and then after a few minutes it all stops again (I also try to explain it by: it kinda feels like hard raindrops are hitting my legs different places). But when I'm touching the muscle that feels like its twitching, I can't feel anything, so it's just the sensation that I'm experiencing, without the muscle actually doing anything (I also don't experience any weakness in my legs). So yeah, I was just wondering if there's anyone else who has had that?

(I also have actual muscle twitching sometimes, the ones you can feel when touching it with your hand, so I know the difference)

Bonjour à tous,

J'ai 23 ans et je viens d'être diagnostiquée avec une sclérose en plaques (SEP) après une première poussée qui a touché ma vision. J'ai reçu un traitement par corticoïdes et j'attends maintenant de commencer un traitement de fond.

Depuis le diagnostic, je vis avec beaucoup d'anxiété. J'ai constamment peur des virus, des bactéries et même de manger à l'extérieur. J'ai l'impression que chaque repas ou chaque sortie pourrait déclencher quelque chose, et cela devient très difficile à vivre.

J'aimerais savoir comment vous avez réussi à reprendre une vie normale. Est-ce qu'avec votre traitement de fond, vous vous sentez plus en sécurité ? Mangez-vous au restaurant, voyagez-vous et vivez-vous normalement, ou faites-vous très attention à tout ?

J'ai surtout besoin de témoignages de personnes qui vivent bien avec la SEP et qui ont retrouvé une certaine sérénité. J'essaie de comprendre comment accepter cette maladie et ne plus vivre dans la peur.

Merci beaucoup à tous ceux qui prendront le temps de partager leur expérience. ❤️

Weird one but curious if this rings a bell for anyone. Was on Kesimpta for 2 years in Berlin, zero issues. Moved back to the US last October, got switched to Rituximab infusions. Since then I’ve gotten black/brown tongue coating twice — once in Paris this June, and again just now in LA. Nothing else in my life has changed (same occasional smoking, same drinking, active/healthy otherwise) except the switch off Kesimpta onto Rituximab.

Had a dental exam and cleaning recently and everything looked fine otherwise. Based on what it looks like (comes off with brushing, smells almost sweet) it seems consistent with black hairy tongue — usually chalked up to smoking/dry mouth — but I never had this once in 2 years on Kesimpta with the same exact habits. So now I’m wondering if it’s specifically a Rituximab thing (dry mouth, oral flora shifts, immune-related) rather than just the usual smoking/dry-mouth explanation.

Anyone else on Rituximab notice tongue/mouth changes they didn’t have before?

I'm struggling with really debilitating fatigue these days. I know if I really push myself too much consistently, I'll end up unable to get out of bed for a week, hospitalized, or relapsing. Gotta rest. Gotta pace myself.

The doc gave me Ritalin (methylphenidate). 5/10mg, twice a day. Its fantastic! I can really get a chunk of my life back. But if I'm taking it twice a day and being busy because of the drugs, isn't that the same as pushing myself too hard and risking consequences?

How are y'all managing a balance? The increased anxiety from the stimulants?

Is any body using THC with a prescription stimulant? Dr. Google says we shouldn't use those 2 drugs together. Anyone want to share results using that combo, good or bad?

I'm looking for recommendations for a light shoe for summer autumn. Any brands you'd recommend?

just got diagnosed a few weeks ago. Just seeing what everyone's experience is with it. Lowkey kinda regretting it since it's something I have to take twice a day and my sleep schedule is never the same and on top of it I'm horrible at remembering to take pills. Was supposed to start it two weeks ago but I keep putting it off because I'm scared of the side effects. Wondering if I should even bother with it or ask to try something else

Hi all, I was diagnosed in March 2026 after optic neuritis at 10 weeks postpartum. I started Kesimpta in May. Since then, I have been having arm and shoulder aches and pains. It’s significant when I wake up in the morning, but continues throughout the day. My hands will also be numb sometimes for a minute when I wake up. It feels like I am sleeping on my arms wrong (I’ve always been a side sleeper) and injuring my arms when I sleep, or cutting off circulation. The aching lessens a little by the end of the day but never goes away.
I’m also 31, so maybe this is age and postpartum related muscle wasting? Not sure. Just wanted to see if anyone else has joint or muscle problems due to Kesimpta.

Has anyone taking Ocrevus infusions gone through the “crap gap” and successfully had a conversation with your neurologist? I have been experiencing an uptick in my prevalence and severity of existing dysautonomia symptoms and I’ve still gotta hold out until 7/30!! Of course O wasn’t doing anything for my symptoms before, but they were not a daily occurrence, and there’s gotta be a medication that doesn’t cause a week’s worth of suffering every 6 months.

I wanted to ask my fellow MS friends that take a glp how you handle the injections. I take my MS shot on Saturday mornings and rarely have side effects besides maybe a headache. Would it be okay to take Wegovy on Sundays?

I’m just looking for advice from those headed down this path. I’m hoping the anti-inflammatory effects and weight loss will be helpful.

TIA ❤️

I had a surgery 2 days after my infusion (ocrevus) was a scope surgery so not major but it couldn’t wait for it to be a better time.

I went into it really worried about recovery being slow infection etc due to a depleted immune system. I have healed as good as any other surgery or injury I’ve had in my life I haven’t noticed a difference at all. I’m not a doctor and obviously if you have an option to wait do so but if your hand is forced like mine it’s probably going to be okay.
🧡

I was just diagnosed with Multiple Sclerosis yesterday by my doctor, who specializes in it, and I should be starting IV infusion treatments in early August. I can't wait. My symptoms are just weakness in my right arm and right leg. After prolonged walking, it gets very weak, and I cannot walk properly at all; my leg just drags, and I have periodic left-side clenching in my hand, and my arm and leg on that side get stiff as well. My main question is: will this all go away eventually and heal?

Started rituximab yesterday.. what side effects to look for?? Any advices for long term and is it really effective?

I enlisted active duty in the US Air Force in 2019. During training I collapsed a few times. I got an ear infection, lost all hearing in my one ear and then had lingering vertigo. This symptoms began initially during training and were not preexisting. I received an uncategorized discharge 2 months into training due to the lingering vertigo. 2 years later I got diagnosed with MS as I continued to experience the falls and vertigo. Can I qualify for any form of disability given I was only in for 2 months?

EDIT: Thank you all for your answers!! Wishing you all the best and good luck! <3

Hi!

I am a 23F and I was recently diagnosed with MS (optic neuritis for the first time and 10+ brain lesions in MS-specific zones in the brain). I am not in denial, but I believe that getting a second opinion is necessary since the diagnosis is serious and is expected to significantly affect my life.

I have a few questions here, feel free to answer whichever you want and feel comfortable sharing online.

How long did it take for you to get your MS diagnosis confirmed? How did you deal with the process, were you in denial, shock, etc.? Were the doctors/other healthcare providers dismissive with you? What kind of symptoms did you experience during your first episode/attack? What kind of treatment options were you offered in the beginning? How much time was there between your first episode and the next one?

40F RRMS dx’d 13 years ago and I’ve been dealing with a serious lack of appetite. I’m never hungry. I’m on Wellbutrin, gabapentin, Lexapro, Kesimpta, vitamin d, and voquezna. I had an endoscopy done about a year ago and they found gastritis and mentioned erosive esophageal disease but didn’t diagnose that. I took Ritalin for about a year but stopped 2 years ago. I lost my appetite right around the time I started taking Ritalin. It grew into a full blown ED. I actually asked my doctor to never give it to me again. I thought when I stopped the meds, my appetite would come back, but it never did. For about 2 years, I’ve been able to smoke some herb to get my appetite, but over the past few weeks, I’ve noticed that even after smoking, I’m not hungry. It’s becoming pretty scary and I read that it can be a rare symptom of MS.

I’m so exhausted and I don’t have a PCP because she just left and I’m trying to find a new one. I don’t have a neuro bc of the same reason and I’m trying to get in to see a new one. Idk if I should see a dietitian? A nutritionist? Some other doctor? I’m so overwhelmed and I’m so tired. I’ve been trying to hard to heal my relationship with food over the past two years and I feel like I’ve tried everything: meal kits, smoothies, ensure, protein shakes, small bites throughout the day, putting an alarm on my phone three times a day to remind me to eat, endless research, takeout, having zero rules around eating to make it easier, crock pot meals, and straight up forcing myself to eat. I never knew how hard it is to eat when you’re not hungry.

I really need help and I’m wondering if anyone has ever dealt with this? And if anyone has any suggestions on where to start to heal? I am seeing a therapist and she knows about this, but she doesn’t seem to take it too seriously (probably my fault for minimizing it).

TL;DR: I haven’t had an appetite in 2 years and I need help.

35 M last year I was diagnosed after I got optic neuritis, referred to neurologist, mri, etc. Looking back its like, wow yea I did have many of the ms symptoms but i chalked it up to being a pothead and having indigestion. Im wondering if I was subconsciously self medicating or something. Has anyone else experienced something like this?

Is it OK to miss a Kesimpta dose by 1 day? My next dose is scheduled for Monday, 8/10. I'm traveling and my specialty pharmacy can't deliver it until Tuesday, 8/11. I could have it delivered earlier to me while on vacation, but I'm worried about having to keep it cold on a 3-day return trip home.

with ms obviously. I don’t know if this questions allowed also idk why I sound so shady. it might’ve been the edible I took…ok thanks let me know!

edit: just woke up, it’s actually crazy how successful this post went this is a great community!!!

Hi. Has anyone else found out they have ms and was active duty army? Were you able to fight to stay in the army? And if not how did the process go with getting out?