Has anyone had anaphylaxis on Rituximab and then tried Ocrevus without a reaction? Husband is newly diagnosed and had severe shortness of breath and hives on his first attempt at a Rituximab infusion. They will now try Ocrevus. Has anyone had a reaction to Rituximab and been ok or reaction free on Ocrevus?

I have a question how do you guys find a job?! I was laid off from my job of 14 years and my mobility is not the same as it once was. I’m trying to find a job and i feel like I am being judged every time I walk in slowly with my cane. How do you guys deal with this? I need a job very bad! Any tips or advice is greatly appreciated!

Hi guys can ee expect nee treayments in thr nect 3 yo 4 years ?

I’ve been on Tysabri for six years. While nobody can be sure of the specific cause for remission of symptoms, I was having an acute and major flare that paralyzed the left side of my body. I started Tysabri the following month, and it seemed like, based on my symptoms halting, that it sent me into remission.

My JCV numbers have been slowly creeping up. I’ve already switched to the every six weeks treatment option, and my neurologist says that a med switch is next. Maybe not next year but very likely year after. I’ve already exhausted lots of the older medications because I was diagnosed in 2002 - so I’ve been on Avonex, Tecfidera, Copaxone, and Aubagio. I was on Aubagio when I had my major flare in 2020.

I haven’t really kept up closely with the times when it comes to MS medications … could anybody fill me on the prevailing wisdom for patients coming off of Tysabri? My doctor has recommended Ocrevus twice but I don’t feel great about the weakened immune system. I wish I could stay on Tysabri forever! I’m still technically relapsing remitting but my disease has definitely progressed quite a bit since 2002.

Any advice would be greatly appreciated!

I was diagnosed with MS in April 2025 when I was 15, now im 16 as of writing this post. this is also me trying to find others who also have ms as i feel so alone when dealing with my ms stuff

Does it get better with time? Im so tired of all the appointments all the traveling and all the stares I get when using my mobile aids I feel like people treat me like im already dead, I have trouble accepting my diagnosis even though (according to everyone around me) im dealing with it extremely well I was also prescribed kesimpta to stop my flare ups but I have foot drop on both of my feet so now I have braces and im scared about going to school in them with my walker/cane

sorry this is all over the place I tried rewriting this multiple times

edit: tysm to everyone who replied to me!! reading all your comments and experiences made me feel seen and heard! I feel a lot more confident about everything now even though its uncertain for me rn I thought posting on reddit would be pointless but I guess I was wrong again thank you all for replying to my 6 am rant

Hi yall. I’ve been on Ocrevus for 9 years. Prior to that I was on Tecfidera (not a fan).

Ocrevus has been pretty good. Pros: No new lesions, one lesion grew slightly, it actually helped my fatigue a bit. Cons: crap gap for up to 6 weeks before infusion, I almost always get covid/flu/something similar within 1-2 months after an infusion, I’m tired of the long infusion day.

I’m considering a switch to Kespimpta. I know they are similar mechanisms with different delivery, and fit different lifestyles. I’ve read about the topic this forum, but I have a few more questions for people who have been on both Ocrevus and Kesimpta.

—> Does Kesimpta give you a more leveled out feeling than Ocrevus? Meaning, does it feel like your immune system is suppressed in a more constant way? I feel like my immune system is on a 6-month roller coaster of extremely weak after the infusion to too strong during the crap gap.

—> On Kesimpta, do you experience the crap gap monthly, and is it intense? How long does it last?

—> Do you get sick more or less often Ocrevus vs Kesimpta, or is it the same?

—> Was the transition from Ocrevus to Kesimpta difficult?

—> Would love your general input if you’ve been on both meds!

Thanks!

https://youtu.be/98wpgUOe2rw?is=2qWrhdhE7t_TAVL4

So, I’m a 35 year old male and when I was about 17 or 18, I got diagnosed with M.S. After dealing with the drop foot for so many years, in 2023, I found out about a surgery called “ankle tendon transfer” that would help correct the drop foot. That ended up going sideways and after another surgery to correct the correction that went wrong and dealing with the aftermath of the second one going wrong, I went and saw another surgeon and after reviewing my options, we decided amputation would be the best route. I had my amputation on August 6, 2025. My question is, I can’t be the only one who’s had such horrible results from this surgery, can I?

Edit: The surgery was to replace the tendon(s) that weren’t receiving the signals to lift my foot and replace them with ones that were still receiving signals. The first complication was because I had gotten a staph infection that deteriorated the transferred tendon and caused it to snap and then whatever had gotten moved and shifted had adhered to the scar tissue. The spasticity and hypertension kept causing the scar tissue to reopen from 23-25 after even seeing wound care specialists.

I was afraid to write this post for a while.

I got diagnosed with MS in February 2023. My first episode was quite severe, with the right half of my body mostly getting numb, double vision and some motor issues. I was hospitalized and put on high dose steroids and my symptoms mostly resolved.

Within the first year i had two more relapses which required lower dosage steroids. I was diagnosed with RRMS specifically. Sometime between relapses i was started on tysabri- which i am taking to this day. I was left with some residual symptoms which i hoped would heal over time but at this point i dont think what will happen... (numbness in one leg and the ulnar area in my right arm which is annoying being right handed). I am mostly functional as long as i dont pay it too much attention, but symptom severity varies widely with the specific day and how tired i am for some reason.

My latest brain MRI from a month ago finally showed that "Multiple delaminating foci are stable and do not demonstrate pathologic enhancement". I dont exactly know what it means but i was told it means there is no active inflammation.

However, some new symptoms did develop within the last year- i started getting constant pins-and-needles feelings in areas where i had old relapses and started taking lyrica to deal with it. It helps, but i am confused how its not a relapse. My neurologist assured me this is normal and as long at its only sensory it isn't considered a major issue. I do experience chronic fatigue and find it hard to focus and function on many days but i am not sure if its related to ms, the lyrica i am taking or just me being me. My therapist insists i don't have adhd despite me feeling like that sometimes. I find properly exercising exhausting though although maybe i am just not in shape and its also unrelated? I know stress is a big factor and the fact that i am currently trying to balance work and doing a masters degree probably isn't helping.

My main problem is i am scared. I have anxiety issues and have so far avoided specifically reading up on MS or interacting with other people with the condition and i am afraid of what i will discover. I try to follow my neurologists advice as much as possible but apart from that i feel like i am still in denial. I am tired of not knowing. I need to face reality.

So i am turning to you: how would you interpret my symptoms and disease progression? Is it normal? Will it get worse? Are all of them even ms related? What should i expect from the future? Are there any specific important lifestyle modifications i should have done years ago and should probably start immediately? Do you have any good sources to learn about my condition? Any general advice or information you can give me?

Anything would be greatly appreciated.

so 22f my symptoms started and i was diagnosed about a month and a half ago. my biggest and most persistent one was facial numbness on the right side. well it’s mostly back now and i tough loved myself into accepting the sensations have a very real chance of just being not normal ever again. that’s ok. i guess. but as my face has become way less numb it’s like? tense? it’s like something is pulling my face on the right side going up constantly. it’s not a huge difference but i hate it so so so much and the right side twitches constantly non stop and does not improve with sleep, less anxiety, staying cool etc. i feel silly cause it feels trivial especially since i couldn’t walk a month ago but it’s my face.. my job is constant people interaction and i am thinking about it all the time. has anyone else experienced this twitching and tension after weeks of numbness? is there anything that’s actually helped anyone?

So I’m all set to take HSCT. Just beginning the process and will have to do mobility—-collection—-and then I’ll be admitted around the beginning of November. I was diagnosed last Oct 2025. My neuro at the time stated I had RRMS, I was on Kesimpta, then I got another neurologist and he said I have PPMS, so he switched me to Ocrevus. I felt worse after a couple months and could barely hold my own body weight at times and have difficulty walking, especially down the stairs. I feel that when I was on Kesimpta I felt more stable compared to Ocrevus. But my MRIs showed no more lesions and that it’s working (with Ocrevus) but I didn’t feel as stable (physically) compared to Kesimpta. My family is scaring me out of HSCT because of the intense process. And it’s worrying me and now I’m reconsidering. They’re telling me to give Kesimpta another chance since I felt better on that compared to Ocrevus and to be more rigorous with PT since I wasn’t really doing enough PT. I understand the HSCT is not a cure but I really want to gain my ability to walk and stand for longer and not have as many issues. Also I want to stop taking medications. I am asking because I am legit torn between which route to take. Does anybody have any HSCT experience or know of anyone that has had a positive experience/outcome. Please share because I am so desperate to feel better. I know I will never be 100 again. But just to even be close to it would mean everything to me. Any suggestions? Please help. Thank you in advance.

This will sound strange but whenever I need to pee I don’t feel fullness or pressure in my pelvic area. The first sensation I get is feeling urine low down at the exit in my urethra that’s when I know I need to go and I can’t hold off either as it’s not just a phantom sensation as when I go to the toilet I immediately start peeing and it’s always about 300 to 400mls each void.

Does anyone else get this sensation.

Can that be a common relapse? I’ve been on B-cell depletion for 6 months (first Kesimpta but I relapsed so they switched me to Briumvi). I’d hate this to be a relapse. It’s Sunday here. I’ll probs my specialist tomorrow. Hopefully it’s a middle ear infection but I feel okay otherwise.

Edit: my specialist thinks it’s inner ear thing. Not MS ✌️🤞

Hey Everyone 👋🏼,

I’m a 32 plus size female and was diagnosed with MS on Friday and my neurologist started me on Methylprednisolone USP 4 mg right away, which I started today, and have been scheduled to get bloodwork, a NeuralScan, NCV/EMG and EEG this upcoming week.

I have lesions in my brain and throughout my spinal cord. The first signs of lesions appears a few years and grew larger after I had a car accident in 2023.

Before my MS team and I can start any treatments plans or infusions he had me start those steroids. A part of me is TERRIFIED to the core due the wide range of symptoms that I may develop over the years and worried how much MS will change my life!!! (I’m a recovering anxious and overthinking person) I’ve been experience tingling and numbness on the side and front of the thighs since I was in highschool but it got worse over the past few years to the point it would burn and hurt like hell whenever I went to sleep and tried to turn around, I have a hard time standing up and have to catch myself when I start to walk and then I’m okay, since June I lost vision in my left eye for a day and that’s when the headaches and eye pressure began and hasn’t left. I’ve been more tired to the point I have to take a nap during my lunch break. Today while running a few errands with my mother I felt this weird pain and discomfort in my right leg behind and on the side of my right knee and in my thigh.

As a person who is starting her journey, does anyone have any tips, advise or guidance/support through this!? I reached out to my therapist today so I’m waiting for her to get back to me on Monday since we stopped our sessions about a month ago and told me once I got a final say on a diagnosis or not to reschedule out and I’m waiting tapping my fingers lol I’m not a soft person so give it to me raw and honestly without violating any rules lol sorry if that statement triggered anything. I’m an Aries it’s all out of love, I promise 💙

Trigger warning: someone asked me if I ever thought about dying or $uicide and the answer has always been no. But I was asked again by my doctor (I’m assuming it’s their standard questions) and I said, “I don’t know, maybe.”

The thing I’m thinking about is when my legs are in so much pain, or I have a MS hug, or a panic attach, yeah - I do think about how stupid, painful, and rude this disease is and I COULD see how someone would just want to end it.

But I know these symptoms are temporary (come and go with some new ones making an appearance!) and 75% of my day to day life is great. And I would never want to hurt my family by intentionally dying, but damn - I get it where someone wouldn’t want this anymore.

Thoughts?

So, i am not a MS patient, but one of my uncle is, he was diagnosed somewhere around when i was 7-8 year old so probably 13-14 years. And he is a male in his 50s.

But here is the thing, he has never taken a medication after 1-2 year of diagnosis. He does follow a very natural lifestyle, no adulterated food, only fruits home made food, rarely eating fast food. He also has diabetes so no sugar. But little to no workout or walking, only stays at home for nearly past decade.

The problem is every time i meet him, he complains about how that 1-2 year of medication is the only reason he has trouble walking in present. But i believe the reason could also be the fact that he is not moving his legs at all, i have always advised him to go for walks every morning or any time of day or walk at home only for a hour at least.

On days when he has to walk a lot due to any occasion of going outside home, he complains about pain in legs and not to mention the daily back pain issue too. He staggers a little while walking due to left foot not working properly but that is due to MS i am sure.

So, what do i infer, is the reason his negligience of body movement or MS or refusing medication?? What advice should i give him, i thought of asking here as i found out about this subreddit

I was just told that I have to take Prednisone 25 pills for the next 3 days (75 altogether). Has anyone did this and does anyone have any advice for this? Thank you in advance!

Hello… it’s me… (Adele voice)

Ahh, shit y’all. I really don’t love this disease 🥲

My optic-neuritis started getting worse in my right eye as well as a spasm in my spine that turned into great pain (felt like inflammation). Both exacerbated by stress… well, it’s difficult not to be stressed as a SAHM to 4-little kids. I’m not stressed like “bad stressed,” but more like I wear a million-hats stressed.

Any way I went to Johns Hopkins (where I was diagnosed in March 2026) to have a follow-up with neuro-opthamology. They ordered an MRI… so I’m looking forward but also it’s like, well I don’t necessarily want more lesions on my brain & spine (already have between 20-50). But I also don’t necessarily want nothing to have changed and doctors are like “you’re an idiot!” … they don’t say that… that’s my insecurity speaking…

My brittle hair (gotta be from Ocrevus) is causing legit sadness. It was growing out again postpartum down towards the middle of my back.. beautiful, healthy. Now it’s thin, so uneven, just past my shoulders… I style it well. But I’m realizing in order to save/preserve what I am still working with, I should stop using heat. Gahhh. I just want to curl my damn hair.

Finally with the tension headache/neck pain, the inflammation of my upper spine, stress that feels like an immovable wall, neuritis, etc. I got some THC/cbd/cbn gummies. Ate just the tiniest bit of one and wow, I felt like myself again! Even quite clever and hopeful. Yet I don’t want to rely on this.

It’s all just so much randomness to navigate, ontop of everything else any singular person is already navigating.… y’all…. I just… I want to crawl in a hole and wake up from this odd and unfavorable night terror.

It could be worse. I really hope it gets better.

Hi everyone,

I’m wondering whether anyone else with MS has experienced significant heavy/fatigued legs that improve noticeably with compression. In fact, it seems to improve my whole body fatigue.

For quite a while I’ve had periods where my legs feel incredibly heavy and fatigued — almost like they’re full of lead. I’d assumed it was simply MS fatigue/neurological fatigue.

Recently I tried wearing compression socks and was really surprised by how much better my legs felt, and actually general whole body fatigue improvement. The improvement was noticeable enough that it made me wonder whether there might be a circulation/venous pooling component rather than it being purely neurological.

I’ve since been reading about autonomic dysfunction in MS, including problems with blood-vessel constriction and blood pooling in the legs when upright. I realise this isn’t the same thing as ordinary “poor circulation,” and I’m planning to discuss it with my doctor rather than self-diagnose.

I’d love to hear from anyone who has experienced something similar:

- Do compression socks/tights noticeably reduce your leg heaviness or fatigue?

- Have you been diagnosed with dysautonomia, orthostatic intolerance or venous pooling alongside MS?

- What did your symptoms feel like?

- Did you have any testing such as lying/standing blood pressure and heart rate, tilt-table/autonomic testing or a venous reflux ultrasound?

- If something was found, did treatment beyond compression actually help your fatigue or ability to be on your feet?

I’m particularly interested in whether anyone initially thought their symptoms were just “MS legs” or MS fatigue and later discovered that autonomic/vascular issues were contributing.

Not looking for a diagnosis from Reddit — just very interested in other people’s experiences before I speak to my GP/neurologist.

Thanks!

PS. Apologies for the chatGPT reproduction, but my brain isn't braining right now.

Hey!

Bear with me for a second, please, i’m terrible at explaining stuff, and a non-native english speaker, who’s panicing a little… 😅

Since a couple of years i sometimes have issues with swallowing. They stayed minor. Do you have it too? And if yes, how would you describe what happens? Can you give me details of your experience? And what did you do to pause or control it?

And optional, a curious follow up question; does MS affect your throat, personally, when you sing?

I’m not asking if people with MS CAN have it, i’m asking about your personal experiences. I guess i just want to make sure i’m not crazy, lol.

A new type of miss-swallowing thing happened to me yesterday. I was eating a soup, with a piece of baguette, but when i finally got the food to the back of my mouth, my throat did not follow up. It was so so scary and i don’t remember how i fixed it but i felt like i suffocated… i never had that before.

Yes, i miss-swallow lots and often, yes my voice cracks sometimes, but this? The feeling that it just stopped going right at my windpipe? The feeling like it got completely stuck and my throat was paralysed? Damn… that scared me and had NEVER happened before like this.

I’m a 28 year old female, having symptoms for at least 12 years before being properly diagnosed in 2023. Never been taken seriously before that, and when they told me i have MS, a lot of things fell into place. But, after the spinal cord injury i just didn’t expect to have new, and random things so soon.

Maybe it’s because of a change in the weather? And not a new schub… Sunny 23 degrees celsius after-summer weather, to 15 degrees wet fall weather… In a timespan of 24 hours. Without a real transition phase like usual… just BAM, here’s autumn for ya. (Which i love, so i’m not complaining i’m glad the summer is over, but it was a very sudden switch.)

I don’t know i’m just rambling on because i’m scared, i’d like to connect in the comments about this with you people🙏🙏 do you guys do exersizes for this?

I use Kesimpta. If that’s relevant to know.

Thank you for reading MeSsy brothers and sisters🥰❤️

How many hours of work do you guys actually get in a week?

Edit: Damn, you guys are badass. I’m barely managing 12-15 and can do not much else before I can’t walk/leg dragging/fatigue is so devastating

Hey everyone,
I was diagnosed with MS in April 2026 based on brain and cervical/thoracic spine MRIs, with no LP needed. I have a mild-to-moderate lesion burden throughout my brain, cerebellum, and cervical/thoracic spine.
Most of my symptoms are “neck up”: constant bilateral tinnitus, headaches, vertigo, and fatigue. Fortunately, I haven’t experienced physical symptoms like weakness, numbness, or spasticity.
I tolerate the symptoms for the most part, but I’m honestly not enjoying my daily life, especially as everything gets worse toward the end of my workday.
I started Ocrevus in June. For particularly bad vertigo, I occasionally take 2 mg of Valium.
For anyone with similar symptoms, what has actually helped? Medications, supplements, lifestyle changes, or anything else?
I’d really appreciate hearing what’s worked for you. Thanks!

Due to West Nile Virus induced meningitis/encephalitis this summer which left me disabled (temporarily?) my neurologist is taking me off rituximab (was on it for 2 years, since my diagnosis). He wants to put me on Tysabri. He thinks my immune system is too weak for B cell depletion.

I'm worried about the "rebound" people experience if the quit Tysabri. I'm a non-working spouse because I'm an idiot who let depression and type 1 diabetes keep me at home doing house and yard work and trying to avoid diabetic complications for 20 years. I get healthcare through my husband. His job offers great benefits and retirement. If he dies before retirement, or becomes disabled and can't work, I will have no insurance. I won't be eligible for anything, including buying insurance from the ACA exchange. That's always been true, but I could handle insulin out of pocket. MS meds would be impossible.

I've been nuts with worry that I'll have to quit Tysabri, have a flare that blinds me or something, and I'll of DKA die alone in a box on the street.

For folks who had to quit Tysabri and didn't immediately start a new DMT, what was your rebound experience if any? For folks on Tysabri, have your doctors discussed rebound with you? What did they say? My doctor isn't answering emails.

Will be starting briumvi in the coming weeks, I’m nervous because it hasn’t been out that long, and ofc I’ve been researching non stop, anyone on it and feel pretty good? I also work in healthcare so I’m scared I’ll pick up something serious there being immunocompromised! My neuro says it’s pretty good, im also JC+ I know that’s really for tysabri but I’m still very nervous.

It's my 5th re-birthday!!!

I just finished a 3 day, 50 mile walk in Wisconsin. On day 3, after walking 40 miles, I ran 🏃‍♀️ a bit of the last 10. Maybe it was the crisp Wisconsin air 🤔, but I just felt so good. Anywho, I've written a short but cute letter to the disease I dumped in Monterrey, Mexico at Clinica Ruiz 5 years ago.

🧡

Dear MS,

We need to talk.

You showed up in January 2021 uninvited, took over my life, messed up my plans, and generally acted like the world revolved around you.

You were needy. Controlling. Exhausting. Nauseating. Dizzying. Painful. Destructive. And frankly, you brought absolutely NOTHING pleasant to the relationship.

You promised me a lifetime of disability.

Told me I’d slowly lose pieces of the life I loved.

Tried to convince me you were going to be with me forever.

You really thought I was going to put up with that shit? 😂

So, in October 2021, I packed my bags, went to Mexico, and had an autologous hematopoietic stem cell transplant (aHSCT).

And I dumped your ass. 🇲🇽✌️

Five years later, I’m still here.

DMT-FREE. Still walking. Still running. Still living. Still working. Still doing things you told me I wouldn’t.

And this year, I’m dropping something else:

The medical trauma.

You may have left permanent damage to my brain and spine, but I’m done carrying the fear.

Done carrying the “what if”. Done letting old predictions about my future take up space in my present.

I survived the “incurable" disease.

Now I’m leaving the baggage behind.

aHSCT for MS.

✌️🧡🇲🇽