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

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!

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

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?

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.

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 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 :(

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.

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?

Hi all,

Found out about a spinal lesion back in June after experiencing left sided weakness. This began the long process of a work-up seeing specialists, eliminating other stuff, etc.

Finally, in August I was able to get into an MS specialist and was diagnosed with CIS. Yay. I think?

The last few weeks I’ve been up and down. For over ten years now I’ve been dealing with weird neurological stuff that doctors wrote off (at least two straight up called me crazy), ignored, and generally let me suffer through (antagonizing neuropathy, weakness, spasms). When I finally saw the MS specialist it was like angels descended from heaven and she LISTENED.

Initially, I was relieved to finally be taken seriously and have my symptoms be justified with a name.

Now I’m just… sad. My grandmother passed in August from chronic UTIs that eventually infected her brain. It was a horrific thing to witness and reading how UTIs and infections are a common way for folks with MS to go… rattled me.

Plus I’m still dealing with the physical impacts of the lesion (started pt, start neuro rehab in October) and it’s just a lot. I can’t really wrap my head around this being my new normal that could potentially get worse and develop into MS.

And I know, there’s a chance the CIS will turn into a big nothing burger long term and I’m holding out hope that’s the case.

I just don’t really have anyone to talk to about this. How am I supposed to act normal and not lose my mind every possible second?

Any advice, wisdom, anything is greatly appreciated. I’m feeling stuck on this unending rollercoaster of emotions.

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.

I've been riding the insurance carousel for the past 2 weeks, nobody communicating and getting different (wrong) answers every time. Basically my dispensary says they haven't gotten the order, my pharmacy hasn't sent the order because the prescription didn't renew, but my doctor has said they've renewed it.

Today's round of calls has gotten me a sample dose from my doctors office so I'm good for 30 days, but the prescription is still in limbo. My doctor isn't available for months but I have an appointment with another doctor tomorrow morning. They claim this doctor can help me with this just as my normal doctor could.

Does anybody have any tips or tricks for what to ask in such a situation? I'm sure this wouldn't be normal or practical but it seems like if we could just call the pharmacy together, it'd get sorted in 30 minutes. "Just sent the fax did you get it? Ok yes good."

I am currently going home after taking the second half of my Ocrevus IV bag. After the first bag I broke out into hives after it was done but this time a new premedication they added was Zyrtec ontop of the Benadryl and slowed down the rate at which the Ocrevus medication was dripping at. I did not get hives this time at all and if I do I was instructed to take 50 milligrams of benedryl and if it’s really worrying or bad then go to my local ER. I did not feel any pain at all or anything it was a smooth it was all good.

https://www.fiercebiotech.com/biotech/novartis-bristol-myers-squibb-halt-car-t-cell-trials-due-immune-events

I am (F30) have been diagnosed and on medication for exactly a year, but I was incorrectly diagnosed for 5 years before that, as no one bothered to do an MRI on my brain to see the lesions.

i have been single for 4 years, after a toxic relationship that i promised myself i wont do any harm that was done to me in that relationship to anyone else so i needed to heal first before any attempts to enter a new one , and after my diagnosis i realized how it would be hard finding a partner who understand, i mean, am still figuring this shit out myself so why do i expect empathy or understanding from someone else.

I have been talking to this guy (M33) for literally 12 days, and we had good chemistry, and he is nice and calm and comfortable to talk to, but we have major differences that I thought wouldn't be the problem; he is agnostic i am technically religious compared to him. He believes in nihilism, and I am the opposite of that.

in brief, nihilism is a family of philosophical views that reject the existence of any objectively meaningful purpose, moral value, truth, or knowledge.

And this is what Google says i did not really have a full grasp of his own definition of it, which is the core issue of the problem.

i havent told him yet about my MS, and we were having a discussion, and i am pushing to understand whats his definition and how does he apply it in real life, and he did not give an answer saying it doesnt make sense to me so it doesnt really matter but i insisted, and we reached a point i expressed a feeling that his beliefs are contradicting to his action and other stuff he said so i dont understand, and my need for validaition and assurances got in the way and i technically told him he doesnt care about me.

In reality, he was invested in our long conversations, extending hours the whole 12 days we have been talking and sharing private stuff about him and his past. He has been single for 7 years, so our connection was a first for him in a long time, as well as for me.

All of this is happening with an MS in the background, i have been struggling all month with the heat, pain all over my body, insomnia, and brain fog, literally my mind went blank twice during our heated discussion, i flared up, overheating, after our conversation ended badly with me apologizing porfusely that i did not mean to hurt him, i stared at the void for an hour, then i took a cold shower, water cold on my head literally becoming warm reaching my feet. i have been sleep-deprived for a week, went out for important errands 3 days in a row, vivid dreams walking up as if I was awake in another universe, sleeping is not rest and showers are exhausting, and I am taking antibiotics for a skin issue that makes me throw up, and I am at my wits' end.

And I hurt him; I did the ONE thing i promised myself not to do. MS will not be a factor ruining my relationships, but it did. The very first time I tried to communicate with someone.,i refuse to say about my MS in the begining cause i dont want a relationship to be based on pity, or someone feeling sorry for me, but it seems to get in the way more times than i can count, i try to process my feelings on my own and be logical when talking to him.

Fellow warriors on DMTs, what are you doing to help yourself through being sick? My youngest started pre-k two weeks ago. I knew I was in danger. They brought home a “mild” to them cold that circulated our whole house. So of course, I’m hit the hardest and taking the longest to recover. I’m also dealing with pseudo-relapse symptoms now. Thanks, Ocrevus.

I am diligent about sanitation and hand hygiene. This is extra insulting as I work full time in a hospital exposed to so many communicable illnesses.

I’m curious if there are extra steps can I take to help recover faster. I have emergen-c immune boosting drinks (haven’t tried yet). I’m on an antibiotic course right now as well.

Please kindly share your secret weapons to faster recovery.

Meaningful improvement because of a compassionate physical therapist 🫶🏻

I told my physical therapist today that some of the exercises he has me doing remind me *a lot* of the movements I use when I’m working in my flower beds.
He looked at me and said, “And why do you think that is?”
Apparently, this man knows gardening is my favorite hobby, knows how important it is to me to keep doing it, and **decided to try gardening himself so he could better understand what movements I need to be able to do.** 😭🌱
He told me, “I know it’s your favorite hobby, and it’s an excellent hobby to keep you functioning, healthy, and active. I decided to try my hand at it too, because it would teach me what movements are necessary for gardening.”
So basically… my PT took up gardening as homework so he could design therapy that helps me keep gardening.
There’s something really special about having a healthcare provider who doesn’t just focus on getting your body to perform certain movements, but actually asks, **“What do you want your body to be able to do?”**
Apparently my answer is: aggressively tend to my flower beds for as long as humanly possible. 😂🌸

I just had my NDIS cut by over half. My housing is tied to my plan and the new number won't cover it. I'm glad I have a good co-ordinator who will advocate for me. I am numb and kind of done fighting.

Recently got eyes tested for some new glasses. The back of my eye images showed that my eye is nearly healed 100% my new glasses correct my vision to 20/20 again. Only took 6 years to recovery to this level. If you are earlier in your optic neuritis journey just know there is hope 🧡

My insurance provider asked me to submit positive biopsy report and set of icp & medicine card?

Is it right expectation?

Hi all,

My partner (37M) was recently diagnosed with MS, potentially PPMS but the neuro is not totally sure on that. It seems like everyone's experience is pretty different, but are there expected patterns of disease progression?

What I mean is, given that he has difficulty with one leg, should we expect that it will extend to both legs, or to the rest of that side of his body or extend to movement in general? Given that he has diplopia, do we expect his vision to be more affected as time goes on?

He currently has no issues with fatigue or heat or spasticity/cramping. If he manages to avoid new lesions (starting DMT soon) is it still likely that they will start in the future, despite being unrelated to his current symptoms?

In general, are there specific symptoms that generally indicate other symptoms will crop up, or is that not really how it works?

These are of course Qs we can ask his neuro but the list of things to ask her is getting long and right now the main focus is on starting treatment, so I thought I'd check here first.

TIA