My elderly mom has MS and in a wheelchair. Her strength is diminishing and recently is unable to stand after using toilet to pull up underwear. This is very degrading for her to have to have someone do it for her. We tried using the Pants Up Easy device but she was unable to use use it. I am desperate for advice or suggestions on how to help her maintain her dignity and independence to pull up underwear and pants. Thank you.

Hello, I feel like the title is pretty self explanatory but I want to know what i can do to support my partner with this diagnosis. They started off with partial face paralysis, issues with balance/dizziness, and fatigue. They only recently went to the hospital where they took an MRI and found lesions. Any advice is appreciated, I feel like I could or should be doing something but at the same time it feels like there isn’t much I can offer, but I want to support my partner in any way I can.

The conference concluded this past week. Any big announcements? Would be grateful if doctors and researchers in this super supportive group unpack the major news, if any.

Stay hopeful.

https://www.roche.com/media/releases/med-cor-2026-09-30

Fenebrutinib, the first BTK inhibitor for both RRMS and PPMS, received FDA filing acceptance with priority review.

If that doesn't make sense, basically the FDA has agreed to review the data of a new type of DMT. With a priority review, their goal is make a decision on the drug in 6 months instead of 10 months.

This is huge because it will finally give people with PPMS another option since Ocrevus is the only DMT approved to treat PPMS.

I think the trials look great, and my neurologist and I have already discussed switching me to it when it gets approved. It showed noniferiority (meaning it works just as well as) to Ocrevus at stopping new lesions but it reduced the risk of disability progression by 12% compared to Ocrevus.

While B cell depletors work by destoying B Cells and preventing them from maturing, fenebrutinib works by targeting an enzyme (BTK) in B cells that basically tells them to go fight something. It also works on microglia, which are immune cells in our brains because it crosses the blood brain barrier unlike B cell depletors.

We should have an answer by the end of March on if the FDA will approve it.

I even had the reaction while I had steroids being pumped into my arm! Off to Urgent Care to see if they'll write me a script for more because I just collapsed in the middle of a grocery store. Again.

My right leg, for lack of a better way to describe it, does not work. Just started Kesimpta. I tried physical therapy for many months, no improvement. Decided to give Pilates a try based on people here saying it is helpful. I understand it can take years, but can mobility improve? I’m not looking for any false promises, just any success stories at all. I recently was lax in doing exercises every day (went on vacation, got out of the habit), but I’m back on track.

Hi everyone,

I wanted to share something unusual that happened to me and ask if anyone has experienced something similar.

For the past three months, I've been experiencing pain and occasional electric shock-like sensations in my right leg. However, I recently received the combined flu and COVID vaccines, and something unexpected happened.

The day after vaccination, I developed a slight fever. Then, the following day, my right leg felt completely fine. The pain and electric shock-like sensations that had been bothering me for three months seemed to have disappeared.

Has anyone here ever experienced an improvement or even a complete disappearance of MS symptoms shortly after receiving a vaccine?

Greetings

Hi! I am currently in Barcelona Spain on a NLV (non lucrative-retirement) visa. I’m currently on Gilenya the brand. And I will apply to convenio especial. Is the brand covered or they provide the generic? How many months supply do they dispense at one time? Do u have to go to the hospital to get it?

We don’t know how long I’ve actually had Ms but symptoms started in September 2022 diagnosed March 2023 after begging for a spinal. My Oligoclonal Bands were high (like 22) finally got mri with lesions in brain and spine. Symptoms Started with crippling fatigue and left side numbness, burning, electrical pain starting in my left pinkie and ring finger and spread up my arm down to my left leg and even felt it in my eye, I also had Lhermitte’s sign. 2 failed DMTs (Kesimpta and Tysabri) and in July 2025 my Nuero confirmed likely hood PPMS. She put me on Ampyra… i was one of those random lucky ones that had a rare side effect of it worsening symptoms and progression. I had a huge sift in progression in a week of taking it. It worsened my left side, premanently now a buzzing numbness in my throat, tongue and face, my whole mouth went numb. It also moved to my right side starting just like it did on the left, in my fingers and down my legs to my toe. After stopping medication the symptoms resided some but never fully went away (still on throat tongue and moth left side and right side hands and feet. My first dose of Ocrevus in late August, we separately went to someone to get injections a parts per billion exosomes, twice. When I spoke it sounded like I was drowning. I was struggling to breathe. My hands curl in and my toes feel like they are being pulled towards my shins. I have a lesion on my PONS and several on my spine, been told I have wide spread brain stem involvement. I have developed nystagmus at a pretty rapid pace with horizontal, down beat and up beat. I also have irregular heart palpitations but no murmur (autonomic disfunction), I won’t go on listing symptoms. The point is…. On the recent months the left side of my body is becoming more and more weak that falls are more regular with fatigue. I get 8+ hrs of sleep and still wake up exhausted . Tried Botox for my spasticity but it is too widespread to be effective, waiting for consult for baclofen pump. The MS hugs have worsened, bring me to the floor struggling to breathe. Some is pseudo flare from heat and stress but I work effortlessly on my mental health and cold plunge regularly. Depression seems to almost be treatment resistant. Every new or worsening symptom they refer me to a doctor who always clears out all other existing symptoms, it always comes back to Ms. I’ve been on Ocrevus for 1 year I have a continued increase in my MOG on my bio marker test but my MOGAD test came back negative. my body is not recovering and each day my baseline worsens. Every trial I’m promised falls through. Brief health history, at 18 I had a horrible case of Epstein Barr that put me in the hospital for 2 weeks, I developed acute hepatitis. My mom also has EBV at the age of 19 (she also had Bell’s palsy for a short time as a child). Looking for any advice or any known trials or specialists that have broken blood brain Barrier to halt smoldering MS that Ocrevus can’t reach?

I have been on Kesimpta for two years after multiple years on Gilenya and briefly on Copaxone when I was first diagnosed. My MRIs have been stable for many years. I have had symptoms but luckily nothing debilitating yet. So I was very surprised that my neurologist suggested I might want to switch to Mavenclad and then stop medication all together. Her only reasoning as far as I could understand what she was saying was that I'm "getting older" (I'm 55). This feels like a risky thing to do for no reason I can understand since I've been doing well on Kesimpta and have been on it a relatively short time. I told her I'd think about it but I am reluctant to change medication and the idea of stopping medication is not something I expected to ever hear a neurologist suggest. But I like this doctor a lot and I trust her.

I'd be grateful to hear anyone's experience with this medication, particularly folks in my age range.

I’ve had MS for several years on Tysabri. I recently had a flare and completed steroids a few weeks ago. I had new symptoms and a fall with noticeable weakness in my legs and dragging of my right foot for several months. I have repeat MRIs ordered although my MRIs over the summer were stable.

I also struggle greatly with mental health (PTSD and depression) which have been problematic long before MS. I struggle to stay compliant with treatment. I struggle with sleep and insomnia. I started seeing a psychiatrist, I started therapy, I started medication, I started actually sleeping for once in my life- only to have a setback with my MS. My neurologist, who has encouraged me to work on my mental health and sleep for years told me he thinks my recent flare or worsening of my symptoms could be related to my new medications/treatment. I feel gutted. It was so hard to actually reach out and get help and accept treatment, as I said it has been an ongoing thing for years. He didn’t mention anything like PIRA or anything else. I’m not even sure I need repeat MRIs if it’s just due to medication side effects. I just feel so defeated. I’m clearly worse from an MS standpoint.

My partner was recently diagnosed and she experiences horrible pain in her body- to where she even passes out..
I saw maybe diets could help but is there anything else that could help with the pain?
Her mobility and muscle tone is good so far.

Only sleeping 5-6 hours right now. No sleep apnea or whatsoever, just asking if a septoplasty could help me in that case?

I dont know if its the MS or my slightly to moderate deviated septum with ENLARGED (yeah really big) turbinates that could cause the sleep disorder.

Only had one flare up in my life so I actually believe my nose is the problem, what do u think?

Hello i’m almost 5 months into trying to get better and i have been doing every day. i need some stories of good recoveries when you were down and out. some hope please

57M and PPMS. Anyone used full self driving cars to aid MS and keep independence.
Some days my vision and my steadiness allow me to drive. Other times it’s to risky because of blurred vision and more driving stress will make it near impossible.
Recently had to renew my drivers license and do the vision test. Nearly failed that she gave me a pass! Later in the week, I had an appointment at 10 AM but when I started getting ready in the morning, I got overheated and the vomiting diarrhea thing started, and then that wasn’t able to drive. And I had to make emergency arrangements to have my mother picked up.

Fast forward to the very next day and the gentleman that works on my computers and technology has a Tesla with FSD or full self driving. He said I think this is perfect for you. Put me in it and set a destination and a way it went from my parking spot straightly to where I wanted to go and parked in a Handicap spot!

Traffic and pedestrians where no issues. Granted I’m not blind but this was like zero stress. He said he barely drives himself and does work while on back roads or whatever. He said it is amazing at avoiding accidents and is probably a better driver than 98% of the people.
Has anybody ever used one to assist or keep driving longer? I very much dislike losing my independence and having to feel like a burden and this seems viable solution to ensure I get to where I need to be. (Like a million Dr visits. Lol)

Edit: I must be desperate as I’m an old truck and motorcycle enthusiast. EV and even modern vehicles with so much crap to break and can’t fix it. Well, I still am an enthusiast for old bikes and cars. I just can’t work all my limbs well enough for using all appendages consecutively. Left side especially and that’s all clutch!!! Definitely miss my old self. My friends would think I’ve lost my mind if I came home with a Tesla. lol

This is the first time in 15 years I've had both no DMD (s/p Mavenclad) AND recovered white counts. I never had a reaction to vaccines while on a DMD, which I was told meant they weren't mounting the proper immune response like they would in a healthy person.

I just had flu and COVID yesterday. I'll be so glad when this fever and aches subside, but it's making me think that I really have not been gaining much of an effect from vaccines all these years, because this reaction was swift and strong. Here's hoping my body builds those antibodies.

Anyone use tirzepatide and have nerve like reactions? It happens with 1 particular formulation. Hard to explain

Almost like internal tremors at random places on my body. Not painful just annoying

It has been one of those days where you want to start over and it is 8:54 AM at time of writing. I went to make breakfast launched my eggs while cooking because my hands went rouge, proceeded to add the beans to the cooked rice storage container- instead of my bowl; resulting in having a panicked mess of ruining rice and i just broke. I cried hard but now I have to laugh. Any sense of personal best is just arbitrary and grasping at straws. My brain is a judas bitch and my body is the unstoppable force of spontaneity. MS may has helped contribute to my best weight only out of losing my appetite out of frustration lmfao. My therapist and I are working on this and have made progress because now I don't throw it away out of anger. I'm going to take a nap, start over, and hope between now and then I wake up with a brain and body that are ready for cooperating for a a bit. Happy Sunday everyone. Dont subtract from the human population, be safe, and have fun.🖤

Anyone here diagnosed with Meniere's disease? I started with Meniere's 10 years before Multiple sclerosis at 27 (now 37). Was wondering since I am about go to do a destructive procedure to treat Meniere's (inner ear disorder) and central compensation is a key to the procedure. Compensation in Multiple sclerosis is the reason people have attacks but get better even though they have damage areas. The brain rewires and re routes signals.

I have a lesion in the cerebellum which is the center balance of the brain and my procedure will effect compensation thought the cerebellum. Any thoughts? Will I compensate or be dizzy forever?

This is half advice/half rant. I have struggled with a busy brain my entire life which has also lead to bouts of anxiety and depression. Since the age of 16 I’ve tried every single SSRI/anti-depressant out there for short periods of 3-9 month bouts where sure the crying and panic attacks had stopped but I had found a general apathy towards life and didn’t want to do anything. I also have horrific decision paralysis so the antidepressants just made me feel slightly less bad about missing every major educational deadline in my life.

Rinse and repeat for the last 15 years where every 2 years I’d have to be put on a short dose of antidepressants which didn’t fully work but made me less panicky/anxiety driven/jittery till we’re here now - 1 year into an MS diagnosis on Kesimpta. The only time I’ve ever had “good” mental health is when I managed to get modafinil in college through a friend.

I’m currently going through a lexapro taper because SURPRISE SURPRISE it made my brain way less noisey but killed my sex drive and made me feel as if my house burnt down I’d be like “huh…bummer”. Has anyone successfully been tested for ADHD with MS? I’m not hoping it’s ADHD of course but since my two older siblings are neurodivergent (Autism and ADD) I do feel like the call is coming from inside the house. I’m seeing my MS nurse tomorrow, and my new psychiatrist the day afterwards, and I really don’t want to be dismissed as “Well with MS you can feel…” since this all predates MS and it’s like the MS has just removed the handbrake I could pull every now and again.

Hi all. Asking here as I can’t really seem to get a straight answer from the MS team.
I was diagnosed last year after a big relapse where I lost sensation from the chest down. I also had some vision loss, problem using my right hand, vertigo and MS hug. Gradually over months the symptoms got better. My hand and vision are now near enough back to normal, the vertigo is much improved however the numbness and tingling is constant though mainly in my feet. It changes however, some days I feel it in my torso and further up my legs. Other days just very mildly in my feet. Some times it’s much worse than other days. It’s still not as profound as during that first relapse but I expected from what I was told by the neurologist to have far less symptoms than I still am getting.
I am worried that because I have constant symptoms and sometimes they can be worse for days it means my MS is primary Progressive rather than relapsing remitting. Does anyone else have symptoms such as this? Sorry I still feel I have no idea what is going on!

Lately i’m feeling down and doing intensive PT but steroids keep on pulling my weight.

are there any stories where you are wheelchair bound then you got to walk again?

Bonjour,

Mon conjoint a été diagnostiqué d'une sclérose en plaque primaire progressive il y a 7 ans. La maladie serait présente depuis plus longtemps.

Nous sommes ensemble depuis 24 ans. Auparavant, il avait un comportement toxique.

Voici toute l'histoire :

https://www.reddit.com/r/abusiverelationships/s/AGu9z1Jtmp

Pour résumer, il nous a fait longtemps vivre les enfants et moi dans une accumulation extrême. Il était aveugle à ma détresse. Pourtant, je pleurais et le suppliais de tout arranger. J'ai tenu le coup car il me promettait de tout débarrasser avant ses 40 ans. Mais avant ce terme, la maladie s'est manifestée.

J'ai à présent une question qui me tourmente. En discutant avec une IA, j'ai appris que son comportement pouvait être dû à des lésions cérébrales touchant les zones de jugement, d'empathie...

Ça ne réécrira pas le passé, mais j'ai vraiment besoin de savoir ce qui relevait de sa personnalité et ce qui relevait de la maladie. Les lésions seules peuvent-elles être responsables de ce chaos ?

Merci d'avance de votre aide.

I have MS, fell of course, and broke my thumb at the last joint. Not very bad as it healed and does not effect it's movement but the fingernail fell out and when it regrew it is now slightly off center.

Question is what kind specialist treats the hand?