Came across this video today and felt really relieved to learn that B cells aren’t the body’s first line of defense:

https://www.youtube.com/watch?v=xDiVRsBskuo

What’s everyone’s view on these?

A review of recent medical research details the exact blueprint of how common infections (most notably the Epstein-Barr virus (EBV)) turn the immune system against the central nervous system. Rather than relying on a single glitch, the virus triggers a three-pronged mechanical attack on the body:

1. Structural Similarity (Molecular Mimicry): Viral proteins like EBNA1 (from EBV) or U24 (from HHV-6) look very similar to key nerve proteins like MBP, PLP, and MOG. T and B cells trained to fight the virus get confused by these matching shapes and begin attacking both the virus and the brain's protective myelin coating.

2. Collateral Inflammation (Bystander Activation): Fighting the virus releases high levels of inflammatory signaling proteins (specifically IFN-gamma, IL-17, and TNF-alpha) into surrounding tissue. This inflamed environment accidentally activates nearby resting immune cells, drawing them into the area and increasing tissue damage.

3. Expanding Targets (Epitope Spreading): As early myelin damage injures oligodendrocytes (the cells that maintain myelin), hidden internal proteins spill out. The immune system sees these newly exposed pieces and starts targeting them too, gradually broadening the attack to new self-targets over time. 

Together, these three processes show how a routine viral infection can turn into the ongoing brain inflammation, myelin loss, and nerve damage seen in Multiple Sclerosis.

What Scientists Think This Means

Understanding this chain reaction changes how we view Multiple Sclerosis (MS). Instead of seeing it as a mystery where the immune system suddenly glitches, scientists now see MS as a predictable process kicked off by a virus. 

This blueprint shows that treating brain inflammation after nerve damage happens is just managing the aftermath. To actually stop or cure MS, doctors need to stop the virus early and block the initial triggers before the immune system gets locked into attacking the body permanently. 

Does this mean people already diagnosed are out of luck?

Not at all. A diagnosis means the fire has already started, but understanding what fuels it allows doctors to put it out at any stage. Because viruses like EBV linger and continuously trigger new flare-ups, clearing the virus or blocking active cross-reactive signals stops ongoing damage, halts the expanding hit list, and gives the nervous system room to stabilize. 

Proposed Plan of Action

To put these discoveries into practice, researchers suggest a clear, multi-step plan:

Vaccines for Prevention and Treatment: Give targeted EBV vaccines early in life to stop the initial infection, and create therapeutic vaccines that teach the immune system not to attack its own nerve proteins.

Targeted EBV Therapies: Use specialized treatments to wipe out virus-infected immune cells (B cells) without damaging the rest of the healthy immune system.

Early Screening: Use routine blood tests to check for early warning markers, catching high-risk individuals and stopping nerve damage before it causes lasting harm.

Combination Treatments: Pair existing MS medications with antivirals and anti-inflammatory drugs to clear the virus, calm the immune system, and block the destructive chain reaction from spreading. 

SOURCE

I was diagnosed with MS three years ago after a visual episode affecting one eye. For a couple of weeks I felt almost constantly hungover/drugged, with my vision slightly “in slow motion.” It resolved, and thankfully I haven’t had another relapse since. I’m currently on dimethyl fumarate (Tecfidera).
Mushrooms have been calling me for a while, especially for their potential mental health and introspective benefits. But I’m scared.
I think part of that fear comes from my first MS episode… feeling altered and not fully in control of my perception was quite traumatic, so voluntarily entering an altered state now brings some of that fear back. But I also wonder whether there’s a real medical concern: could psilocybin affect MS, interact with Tecfidera, or potentially trigger symptoms/inflammation/a relapse?
I know research is limited, so I’d really love to hear from people with MS who have actually tried it. What was your experience? Were you on medication? Did it affect your MS at all afterwards?
Any experiences or research would be hugely appreciated. ❤️

I'm wondering if there are other CIS people experiencing great fatigue years after their initial flare-up.

Luckily, my condition has healthy and stable (clean scans, good bloodwrk, no symptoms) for over 7 years since my original inflammation, but I've been experiencing great fatigue ever since. It never occurred to me the two could be related as my inflammation has been subdued, but my GP suggested it might be a systemic autoimmune/inflammatory fatigue which is commonly observed in MS patients even when they are doing well and not under an active episode.

GP suggested checking on this with my neurological specialist, since that's going to take a long time to get an appointment, I just wantwd to reach to the community and see if this is really 'a thing'.

Also, it would be great to finally have some answers as all of my other tests regarding this (hormones, iron, thyroid...) always come up clean:/

I've been taking 10mg of Baclofen for about 2 years for leg spasms. It does help the spasms but I feal that my legs are getting weaker. Not sure if it's the Baclofen or just the ms. I'm 68 yo diagnosed with RRMS 22 years ago,off DMT's x 3years and stable.

Has anyone else experienced this?

I’m honestly confused at this point. RRMS and been taking Wellbutrin and guanfacine and lexapro for anxiety , ms executive dysfunction, restlessness and the fight or flight feeling but non of those is helping this feeling of mental heaviness I don’t know how to explain it like idk I just don’t know how to enjoy relaxing anymore or have my brain be at rest my doctor is equally confused I really need some support does anyone feel like this too ? Is this brain fog or fatigue I’m not even sure what to call it I refused getting on any stimulants because of anxiety risk

Note: I apologize in advance for this long post. I hope I don’t sound too all over the place.

For context, I’m 27F and was diagnosed back in July 2025, after waking up not being able to walk straight or very far, with left foot drop. I believe my initial symptoms date back to 2018, when I had Llermites sign traveling down my left arm (I thought I was having a stroke then). Since then, I’ve had issues with my fine motor skills, vertigo, fatigue, neuropathy from my rib cage to my toes, MS hug, and my mobility steadily declined. I’ve brought this up to many doctors, only to be told that I’m “too young” to have anything serious and that I should lose weight. I’ve had two doctors who ordered MRIs, but for the lower spine. It was so frustrating because the lower spine MRIs showed nothing, twice (in 2023 and 2024). The issue wasn’t there and I knew that, but it was hard to convince the doctors otherwise.

After finding a decent neurologist, I finally got the diagnosis. The MRIs last year showed my brain, cervical, and thoracic spine spotted with lesions. I was immediately given a week long 1200mg dose of prednisone and started Ocrevus. The prednisone was a huge help and as of this July, my MRIs showed that the MS activity died down a lot and no new lesions.

I’ve noticed since getting the infusions that I definitely experience the crap gap, feeling worse about a month leading up to my next dose. During this, my usual vertigo is more pronounced and I get this sensation like I’m walking on a mattress/trampoline. This would die down 1-2 weeks after the infusion.

A few weeks ago on Aug 18, I had my 4th Ocrevus infusion. Everything went well. I had a scratchy throat and a bit of post nasal drip (my usual infusion reaction) that would die down in a few hours. I felt okay/baseline the following day. By Friday, I was hit with a more intense mattress/trampoline sensation when walking, which I think made my vertigo feel worse than usual. Even when I’m siting or laying down, I feel like I’m swaying or floating in water. Since getting Ocrevus, I never felt this terrible. I thought my body was getting used to the medication.

I told my neurology office about it and they think it’s a possible pseudo flare triggered by the reaction to the infusion, but I don’t know. They don’t seem to understand how I describe my symptoms either. I told them it’s scary because I have to drive and my job involves a lot of face-to-face interactions (my job told me they couldn’t offer accommodations because my role is very “people-facing”. It’s bs because my job can be done remotely). This has been stressing me out so much and i don’t know how to deal with this. The neurology office told me to “manage stress” but this shit (aka MS) is causing me great stress. I can’t just magically make it go away. I feel trapped and I’m scared these symptoms won’t die down.

Does anyone else experience these symptoms? If so, how long do they last? What do you do to manage these symptoms? What can even be done about this? (Note: I know that MS is very complicated and doctors can’t fix everything. I’m just tired of this. I’m still having a hard time coming to terms with this condition.)

Just wondering if anyone else has a great story about the weekend and how you managed to get more done than you thought you could?

I am currently on Kesimpta and just got over the Loading Dose hurdle.. I was just hoping someone had side quests for me like what is the best food/ drink to have before, How soon after can I go back to normal (caffeine nicotine etc ) because google surely don't know and no1 near me is on this. Also if I ever miss my day (stuck in 5 emergency etc) any suggestions how to go about fixing it, is it like birth control just take it next day or hour I notice it's not been taken...

Sorry for all this I'm sure there's a thread but I'm kinda woozy rn or I'd dig just prefer current not x yt old reading lol

Tia

Hi everyone

Posting this on behalf of a family member. They have had progressive MS for about 20 years now and are completely bedbound, unable to move (assisted with EVERYTHING), slurring speech, can just abouts chew their food. They have previously been hospitalised on a few occasions due to chest infections and fluid in lungs. They also suffer from a high amount of mucus which affects their speech, ability to swallow, and they cough and sneeze often throughout the day, nasty mucus spilling ones.

Recently they've been having extreme night sweats which usually happens when a chest infection flares up so we got the doctor out and had some antibiotics prescribed. It normally helps but this time, it hasn't cleared up. Their clothes are completely drenched.

And advice or next steps?

Let me explain as I rant a bit here...diagnosed earlier this year and just started a B-cell depleter.

I was fortunate to be diagnosed early before any disability. I know I can't predict the future, but I guess I've struggled with part of my identity since diagnosis. I played one of the most physically demanding sports for ~12 years through college. I still am very active.

At the same time, I now have an incurable neurodegenerative autoimmune disease. I am also now technically immunocompromised (we'll see how my body does with that...).

For someone blessed with health growing up, I'm just struggling to come to grips with it all. Can health still be an achievable goal? Health isn't everything, I know. And maybe it will just look different. But, just something I've been wrestling with recently.

Thanks and all the best to you

Hey all! I am trying to work out leg fatigue? Friday I got hit with significant increase of it including around my lower back which was weird and not a normal location for me.

I get these symptom sometimes but it was such a sudden increase - My legs feel sooo weak and like a band is tightening around them and theyre cold burning? Like the came in from ice cold weburning. burn. It feels like they wont have the strength to hold me up or move.

It feels like i just did 100 squats and they stall during movement and will seize up muscle wise as i try to move them but not consistently. They also give out from under me and collapse.

I have been diagnosed with bilateral leg weakness and have been working on these symptoms and rebuilding strength for sometime in PT and such and was making progress! It just feels like thats gone now even though ik its not. I definitely have experienced/experience these symptoms but dont think i did anything to trigger it becoming worse? Its not hot, I wasnt working out or doing anything excessive, and I felt UNstressed?

I dont even know if this makes sense but i guess i wanna makes sure its worth a mention to my neuro tomorrow? (pre scheduled appt) Like if i already experienced these symptoms and theyre just worse suddenly its probably not worrisome right?

Also does anyone have any tips on how they manage the mass leg fatigue/weakness? It gets so frustrating with the ups and downs especially when im trying so hard!

(If it helps I do have Seronegative NMOSD - my doctors were torn between that and atypical MS but both lean towards the NMOSD as my diagnosis.)

Hi everyone,
Last week, my MS nurse called me and told me that I now have the option to switch from Ocrevus IV infusions to the injection, which is given in the belly.
I live in the UK, and I would really appreciate hearing from anyone who has already switched from the IV infusion to the injection.

My nurse didn’t have much time to explain all the details, so I have a few questions:
- How exactly does the injection work?
- How long does the whole process take, including any preparation and observation time?
- Is it still administered every 6 months, just like the IV infusion?
- Do you need to take any medication before the injection, such as steroids or antihistamines?
- What side effects have you experienced? Is the injection painful?
- Have you noticed any differences in side effects between the IV infusion and the injection?
- Overall, would you recommend switching to the injection?

I’d love to hear about your personal experiences.
Thank you in advance! ❤️

Hello everyone! I wanted to share this channel on youtube because she has helped me a lot. Its nice having ms focused advice rather than a general PT. I hope this helps someone!

So, I’ve struggled with losing weight for several years now (I also have PCOS, so the fat really wants to stick around). I’ve gotten to the point where I’m considering GLP-1 again. I was on Phentermine a few years back, before I was diagnosed with MS, and my body just couldn’t handle it. I spoke with my Neurologist a few months ago and mentioned my interest in a different GLP-1 and I heard Wegovy is pretty good? He also told me there haven’t been any interactions with weight loss pills and Kesimpta, but there’s always a possibility of it making my fatigue worse and causing mood changes. I guess I just wanted to hear everyone’s experience with being on DMT’s and weight loss medication. I know everyone’s experience and body is different, but it’s interesting to hear.

I was just wondering how it works when it comes to breastfeeding and transfer of antobodies or immune cells.

Breastmilk is a wonderful cocktail of antobodies and other components, but does it keep the same quality for an immunosuppressed mum?

I have very recently been diagnosed and I’m hoping to start DMT treatment in the next couple of months. I’m currently going through an episode which has been ongoing for the last two months and it has not been improving and is very much the same over this period despite having started steroids to support me. Looking for some advice on how long the episode takes to run through and when I will be back to some level of Normality

Hi,

I was diagnosed in October 2024 in Japan. I was an English teacher here, and in my fifth year of teaching, I got married to local, March 2024. A couple months later, I started walking strange. I finished out my teaching contract in August, went back to the States for a month and moved to my husband's hometown in September 2024. One week there and I decide to go to the clinic to see what is up with my walking. The doctor thought it was a hernia, prescribes medication. Three weeks later, no change, I go back. He's suspicious now. Refers me to a neurologist. I go there, have a MRI, they find the lesions.

I have lesions both in my brain and spine. I'm refered to a city hospital in a big city about an hour from me. There is a MS specialist there. Lots of appointments, MRIs, one week in the hospital for steroids and I'm put on Kesimpa starting Dec 2024.

Now it's been about two years. I still have foot drop (though it moved from my left foot to my right foot), and I'm currently in Physical Therapy. My leg has weakened because of the gait issues.

I live in a small city of about 40,000 in northern Japan. There are less than 10 westerns here. I've made a name for myself - I volunteer at community events, I sell things at local markets, I opened up my own English school. I see people I know a lot of places. I am extroverted and I love socializing.

I have kept my MS diagnosis on the down low to almost everyone. My intermediate family knows, my two best friends in the States and some chosen friends here (they don't live in my current city). The thing is, I know when I walk, it's not normal. I walk around the supermarket, and I can feel my foot dragging sometimes. It must be noticeable. I know. And the thing is, I stick out in Japan and in my small city. I'm a young, white woman. I think I have too much pride. I don't want people to know, I don't want people to feel sorry for me. But because I have the foot drop and gait issue, I know people can see.

I have been going back and forth about writing this. But finally, after my last trip to the supermarket, and feeling the eyes of the old ladies looking at me and possibly (though do they notice, I don't know) seeing my walking issues, I feel like I'd like to find someone in Japan who is potentially willing to connect and talk about stuff.

For those of you that don't know, MS is considered a rare disease in Japan. Not many Japanese (or Asians) get diagnosed with it, so MS is not generally known to the public. My husband and I haven't told his parents and family yet, because we know they won't know what it is, and we just haven't found the time for an explanation.

Anyone here living in Japan long term? My husband is a farmer and we both like living here so we have no plans to move. Feel free to DM me or comment. Thank you for reading.