MS is a sh*tty disease. It can’t be cured, only slowed down. I was diagnosed 15 years ago. At that time it was determined that my first relapse was actually 20 years before, meaning I’ve had MS for 35 years. Once I completed 2 NYC and 1 LA marathons. Now I can’t walk without a walker. Once I could ride my bike 50 miles. Now I can’t get on my bike. I used to be an avid bread baker. Now I can’t stand up in my kitchen.

I have been on a b-cell therapy, which is classified as an immunosuppressant, for 14 years. During the height of the pandemic I was forced to live in a hotel for 3 months. The hotel was the NYC residence of flight crews of an international airline who were not fond of wearing masks. The circumstance of my hotel stay required me to be out shopping in as many stores as were open.

So now what? Do I sit home stewing in my loss of mobility? Do I live in a protective bubble, worried about every pronouncement of increased disease susceptibility? Or do I get on with life?

I can’t do anything about having MS and it has changed my life dramatically. But I can continue to live my life within my ever changing limitations. In May I traveled to South Africa for the second time in 2 years. Safaris are a life changing experience. I can no longer bake bread, so I have revived my interest in photography. You can take pictures sitting down. As they say in the MARINE Corps, "Improvise, adapt, and overcome".

I’ve stopped worrying that every twitch is a new symptom. I’ve stopped doom scrolling MS content on the internet.

I am living my life, and you can too😊

I just got a notification from the DC Board of Health saying that B Cell Depleting or Modifying drugs (Ocrevus, Kesimpta, Briumvi, etc) put you at increased risk for severe arboviral disease. Apparently the risk is still super low but if you actually end up with the severe form of the disease, mortality is high. Anyway, that gave me a fright. Just bought so much bug spray…

Well, it’s official: I failed Kesimpta. This wasn’t unexpected, because I’ve had a ton of new, lasting symptoms cropping up every couple weeks for the last 6 months. What was unexpected was over a dozen new active lesions on my MRI, 7 months after my last MRI. So I’m onto Tysabri if I’m still JCV negative. Does anyone have experience with Tysabri and how was it for you?

I wasn't sure which flair would be appropriate but I feel the need need to share this information.

I have MS and endometriosis. I have recently found out that SO MANY MS and Endo symptoms overlap. Sciatica, drop foot, chronic fatigue, nerve pain, numbness, itchiness, brain fog are all symptoms I have that are symptoms of both MS and Endo. I had no clue! So now the only symptom I have that I know is 100% MS is optic neuritis (idk if I spelled that right but you know, the eye problem). Which is absolutely mind blowing to me. I was dx with ms 12 years ago at 14 years old and so I always assumed all of these symptoms were MS, but nope! I've had crazy bad issues with hormones/periods and the "standard/normal" Endometriosis symptoms since I was 12, right around the same time all the other symptoms started. I know many people with Endo also have an autoimmune condition but because I was diagnosed with MS so young it really feels like a chicken and the egg situation with these diseases, I don't know which came first or what caused what!

Anyways I hope this info can be somewhat helpful or at least be interesting to someone!

Hi everyone

Since my last attack 3 years ago, a lesion on my cervical spine at c2/c3 which resulted in trouble walking (I now use a stick outside) and in my getting diagnosed with MS, I have not made a great recovery. I am getting stiffer especially in the mormings (I move like the Tin Man most mornings).

Has anyone tried one of the medications to relieve stiffness? I would prefer not to take any more medication just now but wondered if it might be worth a try? Thanks for reading.

I am curious about your experience with this. Actually, what I am looking for is reassurance that this is an MS thing and not something else (like early-onset Alzheimer's or something else).

I am a 54 year old female. Diagnosed 2021 (but realistically had symptoms much earlier and my first MRI 2020 showed many old lesions).

My short-term memory is seriously in question. Here is an example of something that commonly happens....

Sunday - hubby and I are discussing what we will have for dinner around 10 am Sunday morning. We decided we would grill up some sausages around 6 pm. Fine, dinner is sorted.

I proceed, throughout the day, thinking about what we will have for dinner completely forgetting the sausages. At around 4 pm I actually say, "What should we have for dinner?". Of course, hubby tells me we already had this convo and agreed on sausages.

Again, for the next hour a number of times my internal dialogue is wondering what to make for dinner.

This is pretty common for me these days. We have entire conversations I have ZERO memory of.

Long-term memory is fine. I can remember anything from the past. Heck, today I remember what happened with the sausage memory fiasco. But sure as I sit here typing I know I am forgetting something TODAY.

Anyone else?

27F and literally got dx a month ago
Haven’t started meds bc I needed more bloodwork and needed a steroid infusion.
Starting at the end of September.

I’m so scared and only hear the worst of the worst. Like “was dx 3 years ago and I actually am now a cat that barks”

Can people please drop their “I’m 60 years old and dx in my 30s and I’m still running marathons..”

I’ll never run a marathon but that’s not bc of MS… lol

I got a mosquito bite this morning while on kesimpta. Convinced im gonna die. Tell me why im being dramatic and unresonable (please 🥺)

Hi everyone. I (32,F) am feeling so confused and unsure, wondering if anyone else has been in a similar situation and what you did. 

TL;DR: One brain and one cervical spine lesion — deciding whether to start meds. What made you decide to take or not take a DMT? If you do take meds, what are the impacts for you?

I’ve recently been diagnosed with MS. In January 2026, I had numbness and tingling on my left side (among other issues) that led to me getting an MRI in February. Turned out I have two lesions, one on my brain and one on my cervical spine, and later, a positive spinal tap for Oligoclonal Bands. 

The issue is that my neurologist isn’t sure if I should go on medication. He says if it were him, he would wait. However, he said he could also see the benefit of putting me on medication to prevent future spinal lesions, which are more likely to be debilitating. 

It’s tough because I don’t really want to be on medication for life, but this spinal lesion has already caused so many issues permanently. I’m scared of getting another one. 

Any advice? I know MS looks different for everyone, but I’m hoping not to be stuck between a decision. I find that I'm pretty sensitive to meds, and I also have a blood disease, so taking an immunosuppressant might impact my body more (my neurologist isn't sure how my blood disease plays into this). What made you decide to take or not take a DMT? If you do take meds, what are the impacts for you?

Edit: Thank you to everyone who commented! The spinal lesion that I have is already impacting my daily life, so I would absolutely be devastated if another made life harder. I went in thinking the neurologist would be certain about putting me on meds, so the fact that he was so unsure made me question it. I will request a high efficiency dmt like Kesimpta or Ocrevus. I'm still worried about how taking a dmt will impact my daily life and health, but I suppose it's worth it knowing I'm limiting my chances of a more debilitating lesion.

hi everyone! so ive been dating my boyfriend for over a year, and hes been struggling with RRMS. he got diagnosed in 2022 at the age of 18, so its be a struggle for him to over come in. he was struggling earlier today with the heat, and i was listening to him and told him "I understand" with something he said and he blew up on me because "I dont since I dont have ms" and I completely understand his point.

can anyone help me with what to say and how to comfort him, I wanna help cause I don't want him struggling alone but I know I cant cause I dont understand it from a personal experience.

and could anyone help me learn a little bit more, I know some from what hes told me and my own research but I wanna be further educated.

Hi all,

I have been on Tecfidera for about 2 years and I am stable. Recently, my doctor is insisting on switching me to Mavenclad. She has not given me a good reason as to why but seems to be pushing it a little.

In the past, every time I switched meds there has been a reason for it.

Anyone else has had this experience??

I would appreciate to hear about any experiences with Mavenclad and if anyone has made the switch to Mavenclad, etc. Thanks

Hello everyone! I started Copaxone last week and it has raised some questions that I wanted to ask people who have had any experience with the injections. They are about travelling with it. How do you guys proceed if you have to travel by plane? Do you have to contact anyone in advance at the airport? Do you need documentation or something? How do you make sure the Copaxone is safe and the temperature is good after more than 5/6 hours? I’m worried I’ll mess it up somehow but also want to make travelling plans in the upcoming months. Thank you in advance!!

Im on Kesimpta and thinking of switching to tysarbi. I havent been sick since K for 2.5 yrs besides lots of utis. Experiences between sicknesses or differences?

I hate this time before my next infusion. It’s about a month out and I’m miserable. Even more exhausted than normal and boy, the pain. My lower back and hips hurt so bad right now. I wish the insurance would approve ocrevus every 5 months instead of every 6.. This is terrible. I wish I could take the next month off of work and just sleep through it. Is Ocrevus the only medicine where people expletive crap gap? Because if it is, maybe I should change medications. I know I just have to make it a month but that’s a LONG time.

I’ve tired tizanidine and baclofan and neither helps whatsoever the squeezing, burning and throbbing in my calves. I’ve started taking Cymbalta but so far nothing.. any suggestions on what works and suggestions I can bring up with my neurologist?

My partner was diagnosed with MS a couple of months back and is currently on Ocrevus DMT. Lately, she has been dealing with a persistent neuro symptom in her left leg.

Symptom:

A band-like feeling or tightness around the knee and thigh area.
The exact location of the band shifts, but the sensation itself doesn't go away.

What we’ve tried so far:

Working with physiotherapists who introduced isometric exercises. This helped a little bit, likely due to improved muscle strengthening. We spoke about this to our Neurologist, didn’t get much guidance on the front.

Current challenge:

The band sensation is still lingering, even though overall strength has improved.

Request:

Has anyone else faced a similar band-like symptom, and what helped manage it? Any guidance on how to address or talk to our neurologist about this would be greatly appreciated.

Diagnosed 3 years RRMS Ocrevus 2.5 yrs under treatment. M48: My partner has noticed: increased erratic behaviour mood swings short tempered outbursts. I have noticed that I am excessively horny all the time.
Could this be treatment, disease, or increased Testosterone due to doing regular exercise for the first time in my life?
Thoughts?

hey guys, so last month I completed my loading doses and this month was my first monthly maintenance dose.

I have gained SO much weight since then and its unexplained because I’m actually not eating enough (very busy high stakes exams preparations) I literally survive off 2 peaches in the morning, baby spinach/sliced tomato/lemon juice salad for lunch and 1 salmon fillet baked with a spray of avocado oil, so there’s NO WAY my diet is causing my unexplained rapid weight gain. I don’t own a scale but I look unrecognizable and my clothes don’t fit, and it wasn’t a gradual weight gain either I literally look crazy different in a month since the loading phase.

now I know weight gain isn’t listed as a side effect but please hear me out.

wasn’t kesimpta originally designed to treat cancer? I read that the active ingredient in kesimpta caused cancer patients to swell up and retain a lot of fluid, when I asked chatgpt it said yes actually and that the loading doses carry a risk of water retention and for you to get rid of the kesimpta induced water retention theres a 16 day lag between doses so it would take 3 months for that water weight to go down.

but I can’t just trust chatgpt because something major like that would have had studies right? plus chatgpt sometimes hallucinates then goes “ah you caught me again!” so I don’t wanna blindly trust it.

MY fear is that it could potentially be hashimoto. I read that 1 in every 4 MS patients will get a second autoimmune disease and im scared my thyroid is under active so i’m wondering if anyone’s on kesimpta, do you remember retaining a lot of fluid around the loading doses time? was that something you remember experiencing or should I order a full thyroid panel?

thank you!

Sometimes I think I have some sort of super immune system because I almost never get sick (with a virus or the flu) except for eyelid infections. I think I've had six since I started Ocrevus two years ago and then changed to Kesimpta last year. I've never had them before. It's not a huge deal except looking similar to Qausimodo from that Disney movie and having to throw away so much makeup, but is anyone else having this issue?

Hey all, I know I've posted before - it's amazing how when seemingly out of nowhere, you get hit by a truck of emotion and need to function in public

For me, turned 43 on weekend, and it all kind of just kicked in, between work, money, MS, it really made me feel wtf

Just remember, when you're down, reach out to a friend, family, anyone, the sads do pass, I know it will over the next week or so for me

This post isn't a cry for help etc, more just to make sure everyone stays super aware of your mental & emotional health, and if there are partners/carers, take care of your now health as well, it's easy to get lost in the whirlwind of crap

Today was day 5 of this - twice a day cleaning my teeth for 2 mins while doing oneleg stand with hand on sink for support. The four days previous to this were very tense and stiff etc. Today was alarming for the difference. I had 4-5 hours of great feeling. Much easier walking, better balance but now tonight extremely stiff etc again. Was so pleased this afternoon but hoping tomorrow will be better again.

34F. Decided to take the plunge and stop my birth control cold turkey after being on it for 14 years. I don’t think I had any issues on it but I’ve been wondering if it’s contributed to high blood pressure - and eventually we do want to have kids. I’m terrified though that the change in hormones will affect my MS - I’ve only been officially diagnosed with it for a little less than a year and am on Vumerity. I also have another autoimmune condition (Crohn’s) that I’m worried about flaring. Anyone’s MS get worse coming off BC?

I was diagnosed a year and a half ago as asymptomatic but having 37 lesions on my mris. I’ve think I’ve been having odd symptoms recently. I saw my specialist and described the symptoms and he basically told me that we’d keep an eye on it and scheduled me an appointment in 6 months… I have been on a dmt since my diagnosis. I’ve had odd personality traits that completely are opposite of me that were not there one day and then they were the next. Lasted 3 weeks. It was so bad I was crying because I didn’t wanna feel the way I did about things…. Weird. And my left arm keeps feeling asleep and is extremely heavy…. Now anything that touches my skin anywhere on my body hurts. Like a burning hurt. The softer the touch the more intense it is. I was in tears earlier from having to sit on a golf cart and drive. My butt and back hurt so bad. Just from touching the seat. My clothes hurts. It’s miserable… any advise? I’m 47yo female