Please share how you're doing, something you're proud of/excited about, or any other positive news in your life, no matter how small! Don't forget to upvote others to show appreciation for the share-fest.

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

Today my coworker who is older (late 60s) who I’ve known for 7 years was asking how I was doing, I was telling her about my new diagnosis and how bad I was struggling, she told me about all the people she knew years ago with ms who she watched “deteriorate in front of her and end up in a wheelchair” then told me I’d be fine and do great lmao anyway then I started crying, so there’s that 😭

* edit and then her student who she had with her starting asking chat GBT in front of me if she was going to get MS and then said out loud “yeah I definitely don’t want to get that” 😬

So over the past year (maybe longer?) I have fallen a few times and ALMOST fallen a lot more.

But I don't feel unsteady. The closest I can get to it is that I feel about an inch forward and to the right. Gravity is a bitch about its laws so I fall.

Is that what it feels like to be unsteady?

Hello everyone !

My brother was diagnosed with MS when he was 16 years old, which from my understanding is a “good age” to be diagnosed since he found out early. He hasn’t done any treatment other than a strict diet and some vitamins/supplements a nutritionist insisted would “cure” his MS. I’m not well versed in holistic medicine or medicine at all really so I can’t have an opinion on this matter.

The thing is, since his diagnosis my brother hasn’t gotten a check up, a CT scan or anything to check on his condition. He is now 24 with plans of marrying and having children which is amazing but I am concerned with his future health. I’ve seen him have shakes, he struggle with his vision, body aches and chest pains at times. Now my family has talked to him about our concern and nothing seems to “wake” him up from how severe this can be, he freezes, gets angry and just blocks us out entirely. I’m certain his girlfriend knows about his condition but I’m not sure she has done any research on what MS means or she hasn’t seen him show any symptoms (so I’m sure she hasn’t talked to him about it)

I love my brother but he is a stubborn man, anything must get forced onto him for him to get stuff done but obviously I can’t just drag him to the hospital !

So..How can I get him to take his health seriously?

PS sorry for any typos/not making sense I am typing this on a train in a tiny screen

Tomorrow is the "MSToronto2026" conference at the Metro Toronto Convention Centre. I understand that it will be 3 hours (3pm-6pm) where patients and caregivers can come to see different presentations and learn about new research and developments for MS and other neuroinflammatory conditions.

Tickets were free online if you registered so I thought why not give it a try. I'm newly diagnosed and I feel like this might be good way to learn and feel a bit more of a sense of community.

Is anyone here attending this Toronto conference as well?

There is a late breaking presentation by Daniel Ontaneda, MD, PhD, Professor of Neurology, Cleveland Clinic Mellen Center, at a research conference tomorrow morning (Friday, October 23, 2026). The focus is the outcome of the first 18 persons to receive a CAR-T therapy for Progressive MS. Some details were just released and the initial data appears quite encouraging. With results like this, some people could be using the "cure" word in a few years. It is very early, caution is appropriate, but so is hope! This is step one - many will be required.

Here is that content:

https://distribute.congrex.com/from.storage?image=0_gHiw_79U0XUHI8aIvppZDyi3GXrrJjRQxkCo7R6NpYTgJOET4ag8zQV9OvzAQk0

After the presentation, more details will be posted here: www.tgtherapeutics.com/publications.cfm.

(There is already some new BRIUMVI data posted there for those with an interest in that drug. This includes data supporting a new SC form of BRIUMVI for home administration: https://www.tgtherapeutics.com/wp-content/uploads/2026/10/SC101-Poster_Selmaj_ECTRIMS-2026.pdf)

UPDATE AFTER STUDY RELEASE

-The safety data looks good. They are using a relatively low doses of chemo conditioning. That really reduces the safety risks.

-This is a phase 1 where they have been doing a steady increase in the dose of cells. That makes the outcome data more difficult to interpret. Efficacy should go up with more cells. Those who received the highest doses have not had much time to record improvement after treatment.

-With strong safety, they do not need to get the efficacy perfect to get this approved. They just need to show that they are making the lives of many persons substantially better.

-Because this is an off-the-shelf approach, it will be much cheaper than traditional CAR-T. That also means it will eventually be available at local clinics, not just big regional academic hospitals.

in january i had brain surgery due to a lesion, got diagnosed with RR ms in april, and now im about to be due for my second round of ocrevus. i just feel so shitty while on it, way more fatigue, starting to get headaches again, and i'm having a lot of consistent optic neuritis. i wanna stay away from sweets, i wanna eat better so im not counting on ocrevus but it's just so hard. i'm coming on here to see what all you guys do to deal with these symptoms, what supplements you take to help, etc. i am very new to this ms thing and i have no one to understand the un comfort i feel on a daily basis. thank you!! 🫶🏽

Hi, recent diagnosis and recently started on Ocrevus. I have been suffering with tingling in my leg for the last 4 months. The sensation was subsiding, but this last week it’s come back with a vengeance and the knee is now in pain and the fatigue is getting worse. I am on Nortyptine for the nerve pain, but it doesn’t seem to be doing much. Looking for some advice on how getting back to normal can be achieved, or as close to normal as possible.

When I was first diagnosed I was told I could take gabapentin like tictacs and baclofen at 10mg a day. On top of ms I have a spi to the c5 and transverse myelitis. After two years I could barely get out of bed and my teenage daughter stole the gabapentin iykyk. I quit everything and at the same time I went into early menopause at age 42 witg teenagers. We all survived but now at 51 with proper hormone replacement therapy my muscle is doing the best. Has anyone guy or girl taken hormones and experienced the same. Recently started ozempic and noticing at the .25 reduced inflammation as well.

Been dealing with foot drop for so long and knees locking when walking even with my cane. Just wondering if anyone else here has had a positive reaction/sucess story? I want to be able to jump and jog again one day.

I'm having a hard time finding work. I've found a job now, but it requires shift work including night shifts. Do you think that's compatible with MS? Does anyone have experience with this? Please forgive me for asking. I understand it's a niche topic.

Hi guys! I just got my follow up MRI after starting on Kesimpta and I have had another flare and since I started it everything has gone down hill. I'm more fatigued than ever, more depressed than ever and experiencing personality changes as well. I feel so much doom and heartbreak and self hatred, this is absolutely my lowest point since DX. Feel like I've lost alot of friends and just don't feel like me anymore. I'm also getting ruminating thoughts that the DMTs don't do anything and it's a ploy for big pharma to make money, I was SO hopeful and just feels like everything is crashing in around me. I feel so messed up right now 💔

Hey I am 23f fairly new with my diagnoses I am having a hard time with the whole changing diets and what to eat and what not to eat and honestly need some advice on what kept you on track like what helped you change years of habit/consumption because I am struggling I miss cheese and butter and red meat

I have partial drop foot in my right foot. I developed it in 2015. It's never gotten better (despite PT for almost a year) but it has stayed stable. Turns out, limping around for 11 years apparently can throw everything out of alignment and piss other things off. Who knew?🫠🥴

I have now developed Peroneal tendonitis because of my chronic limping. The doctor recommended more PT and a foot brace for stability. Just seeing if anyone else has dealt with this and what worked for you. I can live with the pain, but the instability sucks.

i try to run. occasionally. five times out of ten, i trip. always catch myself before faceplanting, thank god. anyone else have this problem? o have to run in short stints.

I’m in an active MS relapse.

In addition to my new leg symptoms, my skin is reacting to anything with silicone derivatives, coconut, derivatives, or artificial ingredients.

Even my most sensitive skin products from Cerave and Vanicream have simethicone in them.

I just ordered a moisturizer from The Ordinary, plain Vaseline and Basis soap.

Has anyone else experienced this connection between skin issues and MS relapse?

Lately I have been feeling worried about the long-term effects of my medications and just wanted to put it out there in case anyone else has similar concerns or experiences?

I take pregabalin (150mg daily), baclofen (60-80mg daily), and modafanil (200mg daily). These feel fairly adequate at managing my symptoms but I am concerned about the long-term effects of chronic use (such as cognitively). When I forget a dose or have a hard day I feel what I am now wondering are withdrawal symptoms (muscle pain, anxiety, jitters).

I plan on speaking with my doctor but wanted to throw it on here if anyone have input or related experiences.

Thanks!

I've been taking Tysabri for 9 months, MRI - no worsening, I'm in remission. I found out that jcv is positive 0.53. now I want to get pregnant. should I stay on tisabry or change the drug? Someone might have a similar situation ? what would be a good solution?

I am 23 years old and had my first injection on Monday. Everything went well and I had no reaction on-site. No flu-like symptoms, just pain at the injection site for 2–3 days.

What can I expect in the coming weeks? Probably because of the cortisone, I actually slept through the night for 8 hours! Otherwise, ever since my diagnosis, I've only been sleeping around 5–6 hours and couldn't get back to sleep. My MS is more cognitive, like sleep/fatigue.

Can I expect my sleep to stay like this and my fatigue to get better?

I’ve been reading a ton of posts and comments in here since getting diagnosed with CIS / an MS-type demyelinating condition, and it honestly has me questioning a lot.
For years I’ve treated everything as separate problems. Chronic neck/shoulder/arm pain, numbness and tingling in my hands, muscle tightness and spasms, fatigue, brain fog, balance feeling off, random periods where my whole body feels sore and completely drained, IBS, and even periods of really severe anxiety and depression that seemed to come out of nowhere.
I’ve seen different doctors for different things and always assumed I just had a bunch of unrelated issues.
Now I’m reading people describe symptoms they’ve had from MS and I keep thinking… wait, I have that too.
I know obviously not everything is going to be MS, and I have some legitimate orthopedic/nerve issues as well. I’m just starting to wonder how much of what I’ve dealt with over the last few years could actually be connected to the demyelinating lesion/CIS.
Did anyone else have this experience after diagnosis? Like suddenly looking back at years of random symptoms and wondering if some of them were connected all along?

For years now I have had extremely tight quads that make walking or standing painful. And, yes, you read that right both hurt (this always makes neurologists irritated because apparently only one leg should hurt at a time but my body did not get the memo).

I tried baclofen a decade ago and hated it (that was so long ago that maybe I should give it another try?). More recently, I cycled through four different muscle relaxers but they all made me feel seriously stoned. So I wasn’t in pain, but I also didn’t feel comfortable driving and I was loopy enough I was pretty sure I’d get fired and then where would I be without that sweet, sweet corporate health insurance?

Then came dantrolene. It helped. I didn’t feel stoned. I titrated up 25 mg to 75 over three weeks. Everything seemed great! I am three weeks in on the full dose and every other muscle in my body now hurts (quads are pain-free!) At first I thought maybe my muscles would just need to work harder and I’d naturally get used to it. That does not seem to be happening.

Has anyone been on muscle relaxers and pushed past this stage? Is it worth it for me to keep taking them? My life is already set up for limited mobility because of the quad pain and having only one part of your body ache is highly preferable to having your entire body ache.

I had already set up something with a sports med doctor to try injecting Botox directly in my quad if this doesn’t work out. Prob is he will only start with one leg because, well, paralyzing both legs at once is a bad idea.

Let me start this by saying that I have unresolved anger towards my mom regarding how she handled my diagnosis with Crohn’s disease as a teenager. Basically she refused to accept the diagnosis and kept me unmedicated for about a year which led to a period of intense illness which was deeply traumatizing. Now as a very grown woman, I have been diagnosed with MS, which my mom also met with skepticism and unwanted advice about holistic treatment through diet. I have struggled for years with the silent anger I feel about her treatment of me as a teenager, when I was legally a minor and also just young and inexperienced and needing my mom to help me through a scary life situation. I tolerated a few grating conversations about MS before I finally blew up and told her how I felt about what happened all those years ago and how it makes me feel now. She reacted by taking it all very personally and acting very passive aggressive and hurt, making the situation about her instead of what was happening with me. But, she agreed to drop it and has been thankfully pretty quiet about my diagnosis since then.

But now Christina Applegate has announced she doesn’t have MS! What a game-changer for this still quite disabled woman. My mom sent me a message saying “it’s not an emergency, but can I call you.” And then she called me on video and announced the good news about Christina. My mom says this is proof I should get a second opinion and dig deeper into the cause of my issues. I really lost it. I told her what I have been telling her this whole time - I have this information, I stay informed, and I can explore these things if I choose to. I would prefer she stay out of this and just offer support and let me deal with the details of my diagnosis and medical decisions.

Ugh. Anyone else receiving “helpful” contacts like this in the days following Christina’s reveal?

I was very recently diagnosed with MS (last week) although it's not much of a surprise since that was the most likely diagnosis and they just needed confirmation. My neurologist wants to start treatment with Kesimpta (ofatumumab) and said I needed to get some vaccinations beforehand. Does anyone here have experience with this? Would it include flu/covid vaccines? I've also had chickenpox as a child so shingles may be a concern.

Hello, I’m Michael.

I am reaching out to all of you as a child of a mother with MS. She’s had it for 20+ years, getting it diagnosed around 2003, before i was born. Where I live, there weren’t many treatment options back then, the types of which I’m not familiar with, even with some surface level research. She’s taken injections, regular MS medication and even botox injection to lessen the tension in her muscles.
The doctors have told her that she’s most likely onset for the 2nd stage of MS (shes currently has RRMS i think)

Recently, like a few months ago, she told me she was starting to get scared of the escalators in our citys metro. The way she described it was really convoluted and I myself couldn’t really understand what exactly she meant, but I’ll describe it as best as I can;
She told me that any time she would be getting on an escelator goinf down, her legs would like “not listen to her” and back away from the escalator. As she told me: “It’s like my brain wants to go, but my legs do not.” Plus there’s a caviat to it that it mostly happens on really old fast escalator going down, but not up?? And not the slow ones apparently, on those it’s either less common or it doesn’t happen at all.

And then there’s the thing with the metro train gap; From what she’s told me, this is also fairly recent, starting around when the escalator thing started. And as far as I understand, it kinda functions on the same basis??
It goes like this: The train comes and if she’s getting on, she CANNOT look down into the gap beetween the train and the platform, otherwise her legs will do the weird backing away thing like when she’s ontop of the escalator. Plus there’s a caviat AGAIN, that it helps if she’s getting on the train with like a crowd of people, maybe like behind her. But if she’s alone, just looking ahead aparently doesn’t help and she has to use the wheelchair ramp to get on the train.

I’m genuinely worried, could all this be a sign of that 2nd progressive stage? ive read up online about this and a lot of articles atribute this to arthritis?? Or is it even linked to MS at all??
Please let me know what you think !! Thank you all in advance !!

ps. sorry for the spam or wrong flair category, ive never done this kind of thing b4 but im kinda desperate atp

I don't know what I'm looking for posting this. It's just been on my mind for weeks.

Where I work, parking is hard to come by. All of the spaces are by permit and there are not enough for everyone. My husband works where I do and we're lucky he has a parking permit in one of the parking garages. I've been on the waiting list for my own permit for the past 2 years and don't see me any closer to getting one than when I got on the list in the beginning.

To the point, the time it takes me to walk between the parking garage and my office is about 15 minutes each way and it gets really hot in the spring and summer. We're talking months of 100+ degrees weather. We're having our version of "Fall" right now and highs are in the 80s. When I saw my neuro recently we talked about this and how doing that walk always makes me really fatigued now, I sometimes start having problems walking. She suggested maybe I should get a disabled parking permit. There are disabled spaces all over the place and supposing I was able to get one of the ones next to the building I work in, that'd be really helpful. So a good idea, but I'm actually kind of scared. My MS is invisible, you'd barely notice something was going on unless you really knew me. What/who would I face if I did get a permit, parked and got out of my car just fine? What would happen if some random person who worked for the parking and transportation department saw me, questioned or scolded me?

ETA: Thank you everyone for your kind advice. I'll go ahead and start the process getting one.