https://www.nationalmssociety.org/news-and-magazine/news/twin-study-gut-bacteria

So i’ve been a remote worker since before my diagnosis. So i’ve found my little routines and things that work for me on days when i’m not feeling so great. my job recently announced they are expecting us to be back in the office 4 days a week starting in a few months and i’m honestly wondering what to do here.

i have not disclosed my diagnosis to anyone at work since it neither seemed necessary or required and i have reservations about doing so. i’m unsure if it could help or hurt me, i don’t want it to be used against me in some way or expose me to any unnecessary vulnerabilities.

does anyone have any experience with this scenario or advice to share?

Hi everyone,
I’m looking for some reassurance, or maybe just to hear from people who understand.
I have relapsing-remitting MS and ever since my diagnosis, I feel like I’m constantly waiting for my body to punish me if I enjoy myself too much.
I’m supposed to be going to Shambhala this year, and instead of being excited, I’m terrified. My brain keeps telling me that if I dance in the forest, laugh with my friends, or just have an amazing weekend, I’ll end up triggering a relapse.
I have numbness pretty much all the time, so every little sensation makes me wonder if I’m making my MS worse.
I’m trying to be as responsible as I possibly can:
I’ll only dance at night when it’s cooler.
During the day I’ll be in the cold river or relaxing in the shade.
I’m bringing ice packs and a UV umbrella.
I’ll drink lots of water and electrolytes.
I’ll eat well.
I get an infusion every six months and I’m on medication for nerve pain.
But despite all of that, I can’t shake this feeling that I’m somehow “not allowed” to have fun anymore.
Part of me even thinks I should stay home forever, never exercise, never dance, never do anything physically demanding because I’m so afraid of relapsing.
I also know there will likely be recreational drugs around. I might be tempted to do a small amount of ketamine, but even thinking about it makes me worry that I’m gambling with my health. (I’m not looking for judgment—just wondering if anyone has navigated similar fears.)
Has anyone else developed this mindset after being diagnosed? How do you tell the difference between being cautious and letting fear completely take over your life?
I’d really appreciate hearing from people who have gone to festivals, concerts, or other physically demanding events with MS. Did you regret it? Were you okay? How do you cope with the fear that enjoying your life will somehow come back to haunt you?
Thank you for reading. ❤️

On day 3 after my first shot of Kesimpta I felt the best I have felt in years. Although the first two days I had flu-like symptoms that third day I had tons of energy, focus and motivation. This feeling continued through the first four shots.

I'm now 2 days away from my next dose (where I had to wait the full month) and I am so tired. I was exhausted yesterday and still today. It's not quite as bad as before, where I was needing naps most days, but I certainly don't feel like doing much more than sitting on the couch.

My fatigue could be coincidental timing for me right now, but crap gap is a known phenomenon where MS symptoms like brain fog and fatigue can worsen for some people before their next dose.

So I guess my question is: why do so many refute that the medications can help improve symptoms for some people, even though they acknowledge symptoms can worsen/return between treatments?

Little backstreet. I (M37) was diagnosed December 2026 after optic neuritis in Nov 2026. Started Briumvi and everything g was looking great...until memorial day.

ON came back with a vengeance in both eyes, making my right eye so blind it was seeing motion only. Spent 25 days at Emory Hospital with 10 rounds of Plasma Exchange and was released. Eyes are better(ish) now. Anywho saw my MS Specialist Monday and he wants to change me from Briumvi to Tysabri dor 6 months. But because I'm an overachiever i have JCV antibodies.

So now im sitting here playing the ole "Your gonna get PML and die" game in my head. But my wife is a worry-wort so on the outside Im telling her it'll all be OK...I just wanna sit in the corner and eat trash food and have someone remind me that it'll be OK too....

Thanks for attending my rant

My friend just put me in touch with his buddy who has recently been diagnosed. He’s in the early stages of the diagnostic process; has had MRIs but no spinal tap yet.

I’m talking to this new member of our shitty disease club this weekend and I want to offer information that can contextualize the disease and maybe ease his anxieties a bit. It sounds like he has been crashing out over his diagnosis. What stats can I tell him that might be hopeful?

I have a rough spiel in mind, but I’m curious if folks on this sub have any pearls of wisdom that they return to again and again to ease some of the mental burden of living with this ticking time bomb of a disease.

Example might be; 30 years ago the average time between dx of rrms progressing to spms was 10 years, today it is now ~25 years with many people never developing spms. ⁱ think about this a lot!

Does anyone here have any info on how to pay for Disease Modifying Treatment like Ocrevus in Alberta?

I'm newly diagnosed by a general neurologist after optic neuritis and multiple characteristic brain lesions on MRI. I'm referred to the MS clinic but they can't see me until early September.

General neuro said that in Alberta there is a program to assist with the cost of DMTs for people without private or work insurance. I am currently in my final year of my university degree, and my student coverage will not cover the full thirty thousand or so for Ocrevus. Then of course after my degree, before I find a job, I'll be without any coverage at all.

Any info is greatly appreciated.

I’ve had insomnia since I was a child, and only started sleeping regularly after being prescribed a sleep medication as a teenager. The dose is now much lower as an adult, and after my MS diagnosis 10 years ago. I can’t sleep without it, not regularly and not during the nighttime hours.

I recently have been prescribed Ritalin for helping with daytime fatigue, as coffee alone doesn’t quite do enough to keep me fully functional at work. I’ve been taking it on work days only, so I can crash on off days.

Is anyone else needing help with sleep and staying awake?

Hey everyone, I got diagnosed in Feb of this year and had my first half dose of Ocrevus in May and second half in June. It'll be full dose every 6 months after this now. I got sick in May shortly after my first dose so my second one got delayed a bit into June and now im sick again as of 2 weeks ago. I used to rarely get sick, maybe once every year sometimes a bit longer and the symptoms were never that bad or lasted that long. Now I've been sick twice in two months and both times I got rocked. I understand it's because my immune system is weaker now but man this truly SUCKS. In May the symptoms were horrid but it lasted a normal amount of time. This time I've had a sore throat so bad that it hurts like the worst pain ever to swallow even my own saliva. It's like my throat is swollen and a raw wound at once. It started last Sunday night, I'm on day 11 now and it's hardly improved, almost as bad as day one. At night it gets worse and I cant sleep more than 4-5 hours a night at this point because of the coughing fits. The doctors all say its viral so I'm SOL and have to wait for it to go away on its own. Has anyone else had infections that last way longer than normal before improving? Is this a new norm I have to learn to accept now living with MS on ocrevus? Or is this out of the ordinary still? Thank you

Does anyone have occasional fluttering inside their ear? It's always the same ear, fast (so not my pulse) and lasts for a few seconds.

I'm trying to decide whether to mention it to my MS nurse or just ignore it (it's only a minor annoyance).

..and it is kicking my ass! Because of the advice of you lovely people, I took a tylenol and benedryl 1 hour before the shot, and I took the shot before bed. Last night was fine, got a headache, but not terrible. Today I am exhausted! In fairness, I walked my dog for 2 miles this morning, but I can barely walk now. Thank goodness I work from home, and I have a fold out couch in my home office which I am lying on right now. Laptop will be next to me with my glass of water and I plan to nap all day, answer emails and work when I need to. I hope this improves as my body gets accustomed to the meds. What we go through with this damned disease!

That’s all. Just sucks that my sleep and temp can be fine, and I’m relaxing, but the “good stress” of traveling and vacation have whooped my butt to where all I want to do is nap… but the napping isn’t restorative. Screw MS.

Im 11 years in on dx (100% sure I was dealing with this monster 10 years prior) and 11 years in on Copaxone, Glatopa, Glaterimer. Im running out of spots to inject. Im hitting more nerves. I am stable(lol hate that word) and have not had new lesions for 7 years. I asked my doc and she said she does not want to try anything new, explained why and I understand. Also had no advice on my shot issues. Anyone where I am at/have been at and what did you do. Im really stuck here.lol see how I did that?

Hi all!

I could use some feedback from others with MS regarding some life decisions that I am making. I was diagnosed 11 years ago and I'm now in my mid-30s. My husband and I have always felt that we would be fine with/without kids and would see how my disease progressed before making decisions. We eventually decided that we wanted to at least try for a baby. I spent 2024 tapering off Gabapentin and preparing to switch to a lower efficacy drug (Tecfidera to Copaxone) that would be safe while trying to conceive. This was daunting for me after many years of stability on Tecfidera, and having Gabapentin for nerve pain treatment since diagnosis.

I’m now at this point where I’m getting very tired of being off of my nerve pain treatment (for over 2 years) and I don’t want to stay on Copaxone forever. My neurologist was hopeful that pregnancy would happen faster so that I wouldn't have to be off meds for so long. We had one pregnancy after about six months of trying, but it ended in miscarriage. We've done fertility testing to ensure that there aren’t any major issues preventing pregnancy. If didn't have MS, I would probably leave things open-ended, and say "if it happens, it happens". The reality is that I’m going to have to call it and some point in order to resume my treatments, which is tough.

I’m curious if any others have had to go through this, or had similar experiences with life decisions about pregnancy/family related to MS. Also totally open to hearing from people who did not end up having children. Any feedback is appreciated, because these life decisions are very nuanced with MS!

Hi Everyone! Hope you're all having a good day

Im looking for hospitals/doctors with experience in managing MS patients on Ocrevus

(I'm a patient who already has Type 1 Diabetes, and is about to start a DMT)

Kindly share your experiences, + suggest hospitals & doctors in Pune or Delhi.

Would appreciate if you could share this.

Hello all, I’m 30m my best friend 30f got diagnosed last week. She went to check up after small numbness in her arm and headache and after 2 MRIs they told her it’s MS, she still needs to go to doctor so they take more samples and provide proper therapy.

She is trying to not show much emotions or says that it does not affect but I can see otherwise. The last few days she is staying more at home and took a couple of days off work.

This is a person that was next me when i heard a shitty diagnosis. I also need to be on lifelong therapy for my condition so I’m trying to explain that this is not so scary and not that strange these days. I know nothing about MS beside first page of Google results. I genuinely wanted to ask what will be a good to cheer her up? She is not in any pain or anything, but I’m not sure if suggesting physical activities is good idea. Also sharing any similar stories I think might help her realise she still can live normal life.

Hey guys,

I’m just starting tecfidera (literally took my first dose last night 120x1) and a couple hours later I felt cramps in my stomach and felt a bit nauseous

It lasted for maybe half an hour then I managed to go back to sleep

I’ve had dinner with proteins, no alcohol or acidic or hot drinks afterwards

For those of you who remeber how it started for yous, did you get some digestive symptoms that got better overtime ?

Im afraid since its intense on 120 how am I going to tolerate 240mg x2 per day 😭😭😭

—- Side note, for those of you who are curious, I’m in France - the generic here is largely prescribed since 1-2 years, almost impossible to get the real Tecfidera The generic for a monthly treatment is 700€ (nothing out of pocket when you’re on social security), Tecfidera is double the price which is why they don’t give it anymore unless medically necessary

A killer! But being done!

I hate radiology so much . My yearly mri results came back . I KNOW i have multiple lesions in c3-c4-c5-c6-c7 since diagnosis . Last year they gave me a false report and my spine mri looked lesion free lol . My doctor said this mri reports are external service and they are usually bad . He said i still have the lesions but everything is stable . This year i had an mri again everything is stable except cervical spine . It days that i have new c3-c4-c5-c6-c7 lesions and there were no lesions in that area before so they must bu new . Wtf are you talking about i have lesions in that area since diagnosis (3 years!!) i dont know if i have something new but i can say this mri report was bullshit so i cant be sad about the cervical spine but also cant be happy about thorocal or brain . Cause it looks like someone looked the mri with their ass instead of eyes. Now i have to wait next week for my neuro appointment. Rant is over….

Does anyone else experience a horse voice (but no pain or irritation) with flares? 3x I've had this hoarse voice during a flare now and wondering if it's related.

Quick question - my doctor asked me to choose a DMT

OCREVUS OR briumvi

I am 37M, based out of Chicago; reading up about both of them; I happen to find alot of people with lots of reactions or infections while getting their first dose.

what’s life after a DMT; how do you feel? I am someone who easily falls sick with a cold, or gets a seasonal allergy with a DMT life’s going to be fucked!?

Will I lose my hair?

I feel I am relatively ok right now, I can swim I can go for a walk, will I be able to do this?

Hiii!

I was not sure how to name the title, lol. I would greatly appreciate some more information and clarity if possible. Google searching had me a bit confused.

I’m from Alberta, dx with RRMS and have been on Ocrevus for 5 years and it’s been a positive game changer for me, thankfully. I want to move to the Metro Vancouver area within the next 2-3 years. Currently sunlife insurance covers 80% and Alberta Blue Cross that covers 20% for my Ocrevus infusions. I’m also getting my infusions once every 9 months.

From my understanding and research, BC Pharmacare does not pay for Ocrevus and Kesimpta and when I do make my move to Metro Vancouver down the road and I find a job, and i pay for 2 health insurances to cover for my ocrevus, would that be a possibility? Basically doing what I am doing now with paying Sunlife+Blue Cross? Am I being naive?

Thank you for any input, and any additional details would be appreciated! Thanks in advance for the help 😊

went to the doctor and he said that my type of MS would fall under PPMS. i have a cane to help with walking so im still able to move around by myself. my question is for the people who have this type. after i start the infusions and some PT, will my ability to walk and maintain balance recover? or will i have to continue to use a walking aid?

Just curious what hobbies people engage in even if it wasnt necessarily impacted by MS

I just moved to CA and got a new job, but my benefits don’t start until 10/1, so I won’t have any way to get my doses for August and September. I didn’t elect to get COBRA because they can’t ship my medication here anyway, but now i have no options for coverage. I called the Novartis Patient Assistance and they told me they can’t enroll me in the bridge program because i technically don’t have any insurance. They referred me to the Novartis Patient Assistance Foundation but I was told it could take 30 days to get set up and I am nervous I won’t be able to get my next dose in time.

Does anyone have any ideas of what I can try? I am frustrated and at a loss of what to do next.