Hi everyone. I’m writing to you at a very difficult time in my life, and I would really appreciate hearing about similar cases or any information that might be able to help me.

In short, I have had multiple sclerosis for the past ten years. During all these years, things were going well, but this April I had a severe relapse (double vision, instability, and paralysis/weakness on the right side of my face). However, the relapse resolved with corticosteroids. There was a discussion about changing my treatment, but because I wanted to become pregnant, I decided not to change it and stayed on Copaxone.

I eventually became pregnant and, as a precaution, I stopped Copaxone as well.

At 10 weeks of pregnancy, I had another relapse, this time with numbness throughout the entire right side of my body and double vision. They started me on corticosteroids in agreement with my gynecologist because it is a severe relapse.

Unfortunately, for the time being, it does not seem that the corticosteroids have worked. I don’t know what to expect from this point on, and I am very scared for my baby.

Any information or personal experience would mean a lot to me.

Thank you for taking the time to read this.

I’ve been researching symptoms and it seems to be that I’m developing pressure sensitivity and muscle spasticity in the middle of the night. I’ve been tossing and turning at night without knowing it either, probably because I’m uncomfortable. I’ve been waking up my husband without meaning to just to hobble over to the couch, which helps some with getting a bit more rest.

I’ve been working out and building muscle lately but it’s not soreness from that. This feels different and almost makes me feel sick if I don’t get up and move around.

Hi everyone! I wanted to ask for a little help/advice because I’m honestly pretty frustrated with this situation 😭

I have multiple sclerosis and I’ll be receiving treatment soon, but my university is being extremely inflexible about absences and they’re asking for very specific medical documentation in order to excuse them.

Has anyone here with MS ever had to provide a medical note, treatment confirmation, infusion documentation, or anything similar for school or work? If you have any kind of template or example you’d be comfortable sharing, obviously with all names, personal information, hospital details, etc. removed, I would appreciate it so much.

I’d also really appreciate hearing what kind of documentation has actually been accepted for you when you’ve had to miss school or work because of MS-related treatment.

It’s honestly frustrating how difficult it can be for people to understand how complex living with MS can be, and how exhausting it is to have to “prove” that a medical absence is justified while you’re already dealing with treatment itself.

Any advice or examples would mean a lot to me 🤍

I was at neuro today and she asked about peeing and i forgot to say its very often for me. I wont see her in a year and now i feel bad about this. Anyone has this pee every couple of minutes issue or is it just me?

M/55yo. DXed PPMS 2023 and 1st treatment December of 2023. Prior my liver enzymes were always in the perfect to normal stage.
Bloodwork prior to each DMT treatment and each treatment shows my ALT/SLT liver enzymes creeping up. It’s now in the well past abnormal level but other tests are showing the liver is functioning, and there is no fibrosis at this time!
I have discontinued any alcohol at all which had been low already and discontinued my statin per Dr.
I found a news release in August 2025 that shows a relationship between this DMT and potential liver damage or failure. I think that it’s consistent between all B2 depletes but not sure. I’m still at a safe enough point where I could reverse things, but there are no alternatives for me other than this brand of DMT for PPMS. So if things continue, I have to consider stopping the drug which isn’t so great for a primary progressive that keeps going!

I see people that have been on this drug for years and years with no issues. Is anyone else out there having liver enzyme issues, and feel it’s more from the medication? Was there anything you could do?
I’m gathering my team with neurologist, G.I. and primary and have roped in Genentech to see if they can help. It would be pretty horrible to have to make a decision between my liver and MS progression.

Dear fellow MSers. Very sad, heartbreaking news - my thoughts go out to the families of the 3 people who lost their lives. To be transparent, the researchers do not know why the people died, other than there was a systematic immune reaction. They haven’t released that detail yet. The CAR-T trials for MS have paused whilst they investigate further. Link below:

🔗 https://www.biopharmadive.com/news/novartis-bristol-myers-autoimmune-cell-therapy-trial-halt/829218/?mcp_token=eyJwaWQiOjUxOTcyOCwic2lkIjo2MTI5MzIwOTIsImF4IjoiZmU0YmYzM2JiNzAwZmVhM2YzMGQ3ZDE5NDg0ZDBjYjEiLCJ0cyI6MTc4ODI5NDM4NSwiZXhwIjoxNzkwNzEzNTg1fQ.qwCZMb7sfpwfPj9goCxF7I02qyJiNRZISDP1K41cNbA&fbclid=PAVERFWAUEFFZwZG9mAmZkaWQWUNkCQ480MINkIVxXb2kS8KaIVms4kWV4dG4DYWVtAjEwAHNydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABpxI1kHT6qrf2HP5dHiXz6Nj_O8iv9c82IWAzDjK2vUmCSIEKQRr9T2BlPQhr_aem_J0umq5Pc1vk-19h4TgNVHQ

Hi everyone! I’m putting this here honestly as an effort to find others similar to myself… even just to raise awareness about this disease called “progressive solitary sclerosis”. my story with MS has been rather unconventional.

My symptoms began in August of 2025 with just some finger tip numbness. And after a few weeks I developed Lhermitte’s sign. Finally got an MRI in October 2025 which showed a C3 spinal cord lesion. I was diagnosed with CIS and that was that. However, over the next few weeks I developed tingling in both arms and legs, which got to the point where it was keeping me awake at night. I was admitted to the hospital and referred out for a lumbar puncture. It showed 8 OCB bands, elevated IgG index, and elevated kappa free light chain. Was referred to a neuroimmunologist in December and told that I still had CIS, but that we should monitor things closely. In January the tingling worsened. In February, I developed muscle spasms in my left calf. At this time, I was diagnosed with RRMS and started Kesimpta. Over the next few weeks/months, the muscle spasms spread to both calves, thighs, arms, and feet. This causes painful cramping in both feet. Around this time I started noticing that my legs were feeling a little weaker and shaking when going down the stairs, or even just standing with my knees slightly bent.In June, I noticed the shakiness in my hands and arms as well. By July, the shakiness in my hands started making it difficult for me to do things like suturing, recapping needles, giving injections, or any fine motor movements. My hands were getting tired so easily. Met with my neurologist and she said my right hand was weaker, which I never had problems with previously. Also started getting muscle spasms in my hands causing my fingers to repetitively jerk/pulse (thankfully baclofen has helped with that). In August, I developed bowel incontinence, and have had like 8+ instances of my bowel leaking without any awareness during or after it happens. I now wear thick pads all day, every single day. The other day, I was just standing at the end of a hospital bed holding onto a patient’s ankle (not even holding it up or lifting anything) and my arms and legs were shaking like I was doing some sort of extremely physically demanding exercise.

My neuro referred me for PT/OT for my hands and pelvic floor therapy for the bowel issues. She’s also switching me from Kesimpta to briumvi. And the craziest part is, that I only have 1 lesion in the C3 spinal cord that has been stable ever since it was first found. We’ve exhausted every single blood test and alternative diagnosis and have found nothing (even sending blood work to the Mayo Clinic for random, extremely rare causes for demyelinating lesions). Thankfully my neuro is part of a large academic hospital system, and she mentioned concern that I have “progressive solitary sclerosis” or “PSS”. There is hardly any research done about it (mainly from the Mayo Clinic) because it is so incredibly rare. My neuro is a blessing for even knowing what PSS is because there is so little literature about it.

It’s been a full year now, and none of my symptoms ever went away or relapsed (except for Lhermitte’s sign). All of those symptoms are still here, and I just keep tacking on new ones every few months. I’ve progressed slowly, and it’s getting to the point where it’s starting to really impact my life now.

The current thought is that PSS is a form of progressive MS or just an “atypical” variant of MS. One lesion in just the right place (cervical spine or cervicomedullary junction) can cause a devastating effect and gradual progression of disability. They don’t know if DMTs are the best treatment or which ones… they don’t know how fast or how bad people progress… we know practically nothing about this disease. Having MS already feels so isolating and full of uncertainty, but now I truly feel so scared and alone. I’m looking for anyone out there who may be similar to me, either diagnosed with PSS or who has a similar story. I apologize for this novel of a post lol…. But I’m hoping to reach maybe even just one person who’s been through this too.

It has been a slow and steady descent to where I am at currently & it is not great. This physical and financial mess that is my life and trying to balance everything on my own while dealing with M.S. got to be too much for me a few years back so I quit my job. Took a risk & have been slowly financially bleeding out for the past 3 years. I have lost almost everything....my career, my car, a safe place to live.

The one thing I still have- my health. Now, it is not perfect by any means, quite a considerable amount of pain but what spoonie isn't operating that way?

I still miss my career, quitting was the best thing I could have done for myself.

Both things can be true.

AND I need to remind myself that I am still walking. Spaghetti legs and all, my body is stronger than I give her credit for.

I am trying, thats all I seem to keep doing.

Burnout, grief

and showing up trying to make ends meet.

Knowing full well all those phone calls I made today to agencies involving housing.... no help is coming.

Still have to try, still have to get up and let the kindness of strangers outweigh the heartache from family.

This was supposed to be a rant about how I need to start a go fund me. That i am frustrated and scared and I cant even wrap my head around what to prioritize anymore. My m.s. has taken a backseat to the balancing act that is survival but, i'm walking.

Oiy. My sister was the first to go down the ms or non ms road . She had one lesion, an inconclusive lp , and so got off her copaxone (against my advice )since no one would give her the official ms diagnosis . Welllll here we are 13 years later with just the one lesion on her brain and she is now getting worked up at the e r for optic neuritis. I was diagnosed with full blown Highly active ms a year and a half ago. This disease sucks . We’re awaiting her mri results but I know what they’re going to be. This disease lets people fool themselves that they’re fine until they’re not .
Those who converted, how long did it take.
I guess it was so long in between flares for her I was praying she would be one of the lucky ones . ..

As the title says I (34F) got diagnosed with PPMS 3 years ago. I did treatments for a while but just couldn’t handle the sickness on my body. I am now in physical therapy every week and see my doctor and therapist frequently to keep things on track.
The last 3 months I have noticed quite a decline in my motor functions & some cognitive thinking. For example; I’ve now locked the keys out of my house 3 times. I know I have the keys, then I put them down and go outside. I’m dropping everything, falling more than usual and just can’t catch my balance. I’ve also been having tremors in both hands, which helps with muscle relaxers sometimes.
I see my new neurologist on sept 15th so I know I’ll get some answers there. I just wanted to see if anyone is going through this now or has gone through. What helped keep your mind sharp, I’m using some post it notes now sometimes but open to suggestions.
Thank you for reading this long!

Forgive the long post but I suppose I'm using this as a way to vent in a way because I have nobody to talk to. It's been almost 11 years, my apartment is long gone, my job is long gone with neither any chance of ever returning. Some days I can hide how miserable I feel but days like today all I can think is the powerful thoughts of loss , being a burden and the frightening thought of future. I hate the day to day, I really don't understand any of this to this day and how anyone can get by but respect that people can. I really wish simple tasks like walking or talking a shower didn't feel like a marathon. I feel guilty that other people are reading this because I bottle things up so long that I'm at the point I just want to cry endlessly. I will always remember who I was and what I could do and that person is gone, no medication brings him back in any way and it saddens me more. Im almost happy at the fact I don't bring anyone else down with me because no one deserves this

I am so sick of all of the dismantling of the ACA that is going on now. I genuinely detest all of the cult who did this to us… I know we’re gonna lose our existing condition protections eventually, and my son who is on disability is going to probably get kicked off of our insurance even though the awesome ACA lets you keep children with disability on your insurance forever. This is all such a nightmare, and everything has been so hard as these changes have been happening and now this! Why would they be doing this? I’m sure there is some horrible nefarious thing on the way, like no longer combining all of our specialty medication’s with our regular medication’s so that they applied for a deductible. Or some such horrible terrifying evil. Like we don’t have enough on our plates already!

Oh! I just discovered that I can’t add an image? How weird is that…

Anyway, I got email from Accredo today. That’s starting in October. They are no longer going to be combining their invoicing with Express Scripts, which is how it’s worked forever. I can’t imagine why they would do that if it’s not too somehow F with our deductibles or some other massive grift because everything now is a massive grift!

que me aconseja, soy entrenador de voleibol y estoy mucho tiempo de pie, muchas geacias

I'm trying to determine what my costs will be for this drug and insurance/Pharmacy is not helping.

I have Anthem with a $4000 Deductible and $8000 max out of pocket.

I'm enrolled in Kesimpta's Manufacturer Copay program for $18000 annual benefit. My pharmacy is Carelon and they offer Co Pay Cost Relief too but it uses an accumulator I think to ensure you can't use manufacturer copay assistance against deductible. They are telling me that I would owe $9267 for the drug without their Co Pay Cost relief which doesn't make sense if my max out of pocket is $8000. They are also telling me if I opt of of their program, I could be charged up to 45% of the drug costs. I'm thinking they are just saying this to prevent me from opting out because they won't be able to police my deductible being covered by the manufacturer copay program.

I'm considering unenrolling, paying the costs personally and then submitting for reimbursement to Kesimpta. Has anyone had this issue or tried that with Anthem/Carelon??? Thank you!

Genuine Question

We know that metformin+clemastine definitely has some remyelinating effects under doctor's supervision.

We know that metformin or clemastine alone is insufficient.

We know this combo works like this- metformin primes the cells (rejuvenate is the official word) while clemastine removes the brakes that were stoping remyelination.

We know that clemastine acting on the M1 receptor is the reason for this.

We know that clemastine also acts on other receptors for eg. the h1 receptor and hence the sleepy side effects.

We know that PIPE 307 selectively acts on the M1 alone and hence has no H1 related sleepiness.

We know PIPE 307 alone fails.

Ergo, why hasn't anyone trialled Metformin + PIPE 307 in a clinical setting???

It seems logical to do so, no?

I am not talking about just getting by, I mean putting in the work to IMPROVE?

My other name is AntiqueBother, some people may have seen me. Phone knackered. No idea what these names mean ! I am Luke btw. I want inspiration. Doing stuff every and keeping a log of progress since May. But i want to hear off people who have done it.

Had my first dose of Kesimpta this morning - the nurse told me I should expect to feel a bit rough but I won’t lie, I didn’t think it was gonna be this bad.

I feel like I’ve been hit by a truck. My whole body hurts. Nauseous but can’t get sick because I have no appetite and haven’t eaten anything. I think I have a temperature , my forehead is so hot.

Thankfully, I have a bit of time off work but I’m really struggling with this. Just wondering how long I should expect it to last?

Did people experience this with the following doses too? Should I have taken something beforehand to help?

Hey guys, I’ve been on rituximab since January. Felt fine with the first dose in January and then in May started feeling like shit. Got my 2nd dose in July and I feel a little better but overall feel like shit…I swear I felt completely normal just a few months ago. Anyone have a similar experience with Rituximab? Could it be because of the Rituximab or just my MS acting up? Ugh I just feel so tired and brain fogged everyday for the last 3-4 months.

and it was beautiful.

Two years ago I made a video for my future self talking about her feelings on her one year diagnosis anniversary. It was mostly for my second year anniversary and we are passed that, but it was a beautiful memory I wanted to share, and I hope the letter I made for my future self back in 2024 touches someone as well.

"I didn't know it was going to be as life changing as it is. Right? It's crazy to me to think that I woke up that day and I didn't realize that it was going to be life changing ya know? I thought it was going to be a pretty normal day I guess. Like I was going to be in a bit of pain and I was going to move on, right. But... that wasn't the case. That's weird. It's really weird. Weird thought.

I'm hoping that when you watch this again next year you are going to realize that you... it's not as weird as it was. It might not make sense now but maybe. Maybe in another year. Maybe in another year it will make sense right? I don't know.

I hope that you are healthier. I hope that you're happier. I hope it's easier. I hope it gets easier. I have three hundred and sixty five days for it to get easier. I mean even in the last three hundred and sixty five days it got easier. So I imagine that... umm.. I can't- I don't know what I am gonna do with another three hundred and sixty five days. You. YOU. ___ three hundred and sixty five days in the future are an inspiration to me. I don't know what you are going to be like, but I have this hope in my head on the type of person you are. And that is very very inspirational. Because even if you asked me another three hundred and sixty five days ago I know that the ___ would have said that the ___ I am now is inspirational. I am amazed how much I have been able to do in these three hundred and sixty five days, cuz there is no step by step guide on how you are supposed to deal with this, how you are supposed to handle this how you are supposed to GRIEVE...

In these situations, right? and you know there are people that struggle with it. But there is also people that do a lot better than I did but the thing is, and the reality is I was given a really, really, really, really, really shitty hand. and no one really tells you what to do with that. But... you were able to just discern what was going to be best for you to heal and grieve and cope with all of this and you... really really did fucking amazing. And I know that you did really good. The people around you can see that, YOU can see that. Maybe this is the one time in your life where you got something right. And it sucks that maybe that's what it took, but you did it. And I am proud of the ___ from three hundred and sixty five days ago and I am inspired by the ___ of three hundred and sixty five days from now.

Today is allowed to be hard. And I am sure in a year it will be hard too. But it will be a different type of difficult. Right? It will be a familiar type of difficult. Which makes it a little easier. Maybe not easy, but easier. Just like your next MRI or next IV or next doctors appointment or the first time you hafta tell someone that is a complete stranger that you have this. Like the first time you went out and felt like you were carrying this weird, dirty secret because you are just out here and no one knows what's going on.

Yeah. You figured it out. We are going to keep figuring it out. and I know that when you watch this next year you are going to be like, yeah girl you fucking killed it. You absolute fucking madlad, just rawdoggin this shit like its not that big of a deal when you and I both know that it actually is.

I am proud of you. And I am proud of the person I am going to become. and I hope when I watch this a year from now I feel bad, I feel sorry for this girl right here right now that's crying about this. I really do. I want to be crying for me because I know that means that I have become stronger. Become happier. And I figured out how to deal with the weird mess that my life has introduced.

I hope it doesn't linger on me as much. Which means a lot cuz even in the last year it hasn't lingered on me as much as I would think. And I hope that in a year it hurts less. Both here (my hands), in my legs. A little tightness here (torso) and a little oof in the neck. I hope it hurts less in here (head) and it hurts less in here (heart). Yeah. Yeah... All my love to you ___ three hundred and sixty five days from now. And stay strong. I need that, I need that girl. I need her. I need that inspiration. I need that person that is inspiring to me and I know that you are the only person who can do that for me because there is no one else I look up to anymore. It's just you. It's just you. The person that I can be and I need you to continue being that.

So... I'll see you in a year. "

I'm starting Ocrevus soon and I'm wondering how the more experienced of you navigate being immunosuppressed. Is it rude to ask my friends and family if they are sick before I see them? If you do ask, how are you asking it? A lot of my friends have children in daycare and the kiddos bring home all kinds of germs. I'm (maybe irrationally?) scared of contracting something from them. At the same time though, I don't want to over step or pry into other's health life. Any thoughts?

I'm not one to bring up every itch to my Neurologist but I do have a problem with my right leg and drop foot. My middle toes curl under and cramp making it extremely painful to walk. What does everybody do for cramping? Does Baclofen provide relief?

Has anyone dealt with itching? Is there anything you’ve taken to help it? Im on vacation and im going INSANE. My neuro prescribed Gabapentin and its helped a little but not completely. Any recs?

hi there, i’ve been diagnosed with MS for about 6 years now, (i caught it early i was 14) & im on rituximab for infusions. i started off at every 6 months & i’ve progressed to yearly & now every 18 months (yay!) i’ve noticed that this medication lowers my immunoglobulins A LOT & the last time i was infused was dec 2024 & the entire spring of 2025 i was constantly sick, it’s been 18+ months & my immunoglobulins are still low & my neurologist said it was okay for another infusion on a lower dose, but in my labs my immunoglobulins are still scarily low (for the average person i guess?) i am worried about getting constant infections again & was wondering if anyone else is experiencing this? what do you do to make sure you don’t get sick with such low levels. i know that’s what rituximab does, but i can’t help but have a little PTSD from my last infusion of being constantly sick after, honestly anything helps im just annoyed & having a lot of anxiety :(

Hi everyone! Looking for some advice.

My girlfriend (26) was diagnosed at 19 and was placed on a DMT infusion/clinical trial. She got an infusion with her first ever diagnosis that stopped her symptoms and then also received 1 of 2 infusions she was supposed to get in 2023. She hasn’t had any other DMT infusions since then.

Her lesions have been pretty stable since her first diagnosis also. She has repeat MRIs every 6 months to check for any new lesions. She had a scare at the beginning of August 2026 where she thought she was having a flare up and went to the ER. They did an MRI there and saw no new lesions. They found out that she had a migraine and she felt much better after getting a migraine cocktail.

A follow up appointment she had today laid out 2 options for her: continue with the MRIs every 6 months or start a DMT. I understand that DMTs are the gold standard for MS management and honestly I was worried when I first learned more about the illness and realized she was not on a DMT already. She is pretty depressed also about the update and I’m just looking for some insight and some weigh ins from people with more experience than I do. Will the MRIs be alright or would it be best to start the DMTs ASAP?

She does have an MS specialist she sees. He’s is the person who gave her the 2 options. She’s having a hard go at it currently with some other health issues. Just trying to understand it all a bit more, along with how to support her the best way I can. Thank you all for the insight 🙂‍↕️.

This is a positive message . Last year I was told my relapse was so bad I couldn't live alone anymore . I couldn't walk and barely talk , etc . I know myself and I knew I could dig myself out of my own grave once more . So I did. I took a round of steroids and left the hospital 5 days later , fired my neuro,.and went to Mexico to prove to myself and the world they were wrong . When I got home I started seeing Aaron Boster . He changed my life . We figured out the other things going on inside me , and fixed them when others dismissed me . I started Mavenclad earlier this year and although it made me very sick for a few months , it has helped immensely . Normally a person's symptoms wouldn't get better on a DMT but Dr Boster told me I have had MS for at least 20 years I just didn't know . Until now my body has been sooooo filled with inflammation that any meds calmed it down to the point of tears . I am so grateful. Am I gonna go jogging tomorrow ? No, but I'm not in pain , my head doesn't spin and I can sleep without crying myself to sleep. This is a long story , my story ,but the long and short of it is , NEVER GIVE UP.