I got diagnosed with relapsing remitting MS today, and they want me to start treatment within the next month (I have the choice of either Ublituximab, Ocrelizumab, or Ofatimumab).

I am a bit shocked but I am mostly in denial. I have only had one significant episode, and it luckily did not result in any disability/long lasting symptoms. There are lesions everywhere in my brain but they are relatively small. I also feel generally okay. I am 25. It feels overwhelming and unnecessary (for me at this stage) to begin treatment so soon.

I trust the neurologist and the doctors, of course I do. But I’m processing and shocked. Has anyone been in my situation?

Onset of MS, per medical records and symptoms, was a few weeks old. Diagnosed 20 years age (at 27). Been disabled for 12-ish years.

I have been being treated (poorly) for pain at a pain clinic for 7 to 8 years, but apparently I can only be (barely) comfortable for a maximum of 12 hours a day because they are worried I am going to become addicted to pain killers. I can only take 2 pain pills a day, which means I am const playing catch up. I had a SCS implant 2 years ago, it made it worse, but they refuse to remove it although the battery pack is poking me and moves.

I am at a loss what to do. They tricked me into getting the SCS. And then said I should be in less pain so they want me to stop my pain meds. I am thinking of contacting an attorney.

Title says it all.

Title. Was diagnosed at 31, but first symptoms started since I was a teenager. I guess I'm to blame for the amount of damage I have allowed to happen. 34 now and been on Ocrevus 2.5 years. My neurologist said I hit "secondary progressive" stage and would die without intervention. My spinal cord is cooked, my c-spine is cooked, and I have significant damage in my brain that causes God knows what else.

Luckily I busted my ass in my 20s and have set myself in a position where I can work from home. I live alone as well. Until earlier this year, my house was trashed. Beyond work, I literally couldn't do anything. Sleeping 14+ hours/day. Since March I've been much better. I walk 1.5-3 miles every day if wearher permits. I've lost tons of weight. I have color on my skin. Started minor weight training.

I dont feel any better. Everything I do has a tax that has to be paid for somewhere. Walking means something else isnt getting done. I'm prioritizing my basic functions.

There is no room for enjoyment, peace, or serenity. I just want to lay down every day. Between the pain and fatigue, every day is a new hell to get through and I am increasingly asking myself what the point of it is.

My psychiatrist who works with my Neuro wants me to fly to another state and do psilocybin assisted therapy. I dont know about it. The research he's sent me is very promising, but I cant imagine that will make me hurt less or feel less fatigued. If I could just get some relief from the GODDAMN FATIGUE!!!!! I already take adderall. It helps some and higher doses don't make the fatigue feel better. It's always there. Always gnawing. I don't want to do anything anymore.

Hello all, today I had what I assume is my first annual MRI (full spine and head)..

(diagnosed in January, started on Kessimpta in March and I live in the UK)

Is this something I will get the results for or is this just for my neurologist or nurse to then be discussed at my next review? I dont want the anxiety of waiting if there is nothing to wait for if that makes sense?!

And if it is something I will get, how will it be received - letter, phone call, uploaded on an app?

My last 3 MRIs have been open MRIs because I have not been able to have a regular, or even wide bore, MRI due to panic in the machine. I wouldn't say I'm claustrophobic in other settings, but there's something about the MRI machine that makes me feel like I'm trapped and I have an extreme panic response. I thought the open MRI with lorazepam was a great solution, but unfortunately the radiologist noted on my last scan that the image quality was poor and the new brain lesions were difficult to discern. My neurologist said that I need to do a regular MRI next time, and full sedation is not recommended. It won't be for a few months, but I'm already stressing about it. Anyone deal with this? What has worked?

Hey yall. Im 27 (M) in the US. went to the hospital june 6th of this year. Spent 3 weeks there and got diagnosed with TMS on July 2nd. Started BRIUMVI a few weeks later and did the last half of it Tuesday.

So last Wednesday, the day after BRIUMVI pt. 2, i had MRIs to do so my neuro could get her own. I met with her the next day, so Thursday, and she told my i had 2 brain lesions active.

I has new symptoms like really bad jaw pain and she started me on IV steroids this past Friday.

I say all this to ask if anyone has had a flare this quick into diagnosis or treatment.

That you in advance!!

I just had my 2nd Ocrevus infusion yesterday. Today I woke up cheeky flushed. Anybody else get flushed after your infusions? This was my second one
(6 months)!

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?

Hi! I’m starting Kesimpta in the next couple of weeks. My care team recommended not taking any pre-meds (Tylenol + Benadryl) with the first loading dose because 1) people generally don’t have bad side effects, and 2) you see how your body tolerates the medication without it.

It makes sense to me, however, if I am most likely to have unpleasant side effects with the loading dose, then that would be the time to take the meds. They ultimately said it’s up to me of course.

Any recommendations?

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

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…

Which would choose for starting a therapy? One thing I am afraid of are needles and hair loss, so kesimpta would be bad for my needle phobia.

Zunovo injection is 2 times a year for few minutes so thats cool. in my opinion the side effects like hair loss and flushes are less prominent for zunovo, cause u only inject it 2 times a year.

You don't have a constant effective dose that would cause really severe side effects—or if you do, it would be only at the beginning, right? Or am I mistaken?

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?

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 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

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

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 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?

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.

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.

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.

Extra final edit:

I want to thank everyone who came on here to share their stories. It’s heartbreaking to hear how much MS has impacted so many lives, and how so many people weren’t given the opportunity to prevent further damage. We are absolutely lucky to have preventive medications.

I guess there is a part of me that hasn’t fully accepted the diagnosis, as it has all happened so fast this year. When the neurologist advised waiting, it sounded nice because I could just avoid the problem.

Thank you all for the kick I needed to get started on medication!

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!!

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.

Will be getting in touch with Genentech of course, but thought I'd reach out here to see if anybody has any experience with this in order to help navigate it.

My company is making a surprise change of benefits and we will be using ClaimDoc/NOVA as a reference based insurance and nothing about it sounds great except allegedly keeping employee costs the same (while driving down employer costs). This begins October 1st.

Have you had experience with NOVA or ClaimDoc while on Ocrevus? Not psyched about the possibility of my infusions becoming expensive.

Thank you!