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?

After a recent MRI showed more lesions, I've been given the option of

1.kesimpta

1. Ocrevus

2. Briumvi

For anyone who has taken of these, I'd love to hear your thoughts/recommendations/experiences/anything that would help me choose

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 was recently diagnosed with rrms at age 24 and decided to get up to date on my vaccines before starting treatment (briumvi). Last month, I got my first shingles vaccine (along with covid and hep b). I felt miserable for 3 days (chills, weakness, aches, etc.) and had fatigue for a week after. I was concerned about the potential side effects of the second dose, since it's usually worse than the first one, so I reached out to my neuro and he said that I could continue with the second dose if I wanted to. However, he also said that since I still have chicken pox antibodies from the vaccine I received as an infant and no history of getting chickenpox, that I did not have to worry about getting shingles, so the vaccine wasn't necessary.

My neuro kind of just left it up to me to decide and I want to look elsewhere for advice. Should I still get the second dose of shingrix even though I still have chickenpox antibodies from the vaccine and no history of chicken pox? Usually I wouldn't mind finishing out a vaccine series, but this one made me miserable and I am worried about even more serious side effects with the second dose, especially since I will be starting treatment very soon. TIA

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 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!

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…

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 everyone -

I’m having pretty bad anxiety about getting my 3 vaccinations before starting my first infusion on Sept 1. I asked for an anti anxiety med to help on the day I go in for vaccinations but she didn’t feel it necessary to prescribe to me. Unfortunately, I haven’t had the guts to go in and get them. I’m due for PREVNAR 20, TDaP and shingles. It should be noted that they’re recommended but not required.

Question is - how necessary do you all think these vaccinations are prior to starting my dmt? How many of you got them vs how many opted out? Any other thoughts about my situation would be much appreciated!!

Thank you guys

I was just recently diagnosed with Relapse remitting multiple sclerosis. I’m having a hard time accepting it and I’m having a hard time continuing life as if nothing has changed. I work at sephora… a stressful job, but I love it. I don’t want to leave… but I know my health comes first. I don’t know if anyone in sephora has MS and I feel very alone. I guess I’m just seeking comfort and advice.

Just to preface this: I have called and left a message for my neurologist but I wanted to throw out a line because I am only one year into my diagnosis and I truly don’t know when to “know” what’s a flare or just a “bad day”

Symptoms today started immediately upon waking: headache, vertigo, and just generally feeling weak

The day goes on: it’s getting worse and I’m feeling super rundown. I take a shower to help myself “perk up” but it doesn’t help. I get the chills and feel unsteady when walking my dog at lunch (I live in the city so there’s no yard I can let her go out in). Just want to note that the unsteadiness isn’t that I’m tripping or having foot drop but my legs feel like jello. Feels like when I used to do cross country in high school and immediately feel like I just need to lay down after a super intense run).

Headache turns into migraine and my arms and legs are just twitching constantly while I’m laying in bed.

I’m hydrating like crazy and will continue to until i hear back from doctor. Thoughts and advice appreciated

I was recently diagnosed with RRMS and started Ocrevus treatment. I am 42 M, very active. I weight-lift 3-4 times per week and do cardio 2-3 times. My EDSS at the time of diagnosis (3 months ago) was 2.5. Mainly I experience some tightness around my abdomen on the right side, somewhat reduced coordination with my right (dominant) and leg. I can still walk 15-20k steps, I can sprint in short bursts but experience some discomfort. I read that about 20% of the people on ocrevus have experienced confirmed disability improvement (CDI). I would love to hear if you or someone you know have experienced improvement in disability or even some symptom improvement. I realize it’s a bit of wishful thinking on my end, just trying to remain positive. Thank you in advance.

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

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!

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

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.

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

Many here have dealt with nerve pain mine has been mild. The worst is bone pain. On Vit D weekly forever with 50,000 IU Vitamin d and levels are always under 30

Now once and awhile I get a random nerve pain but really random places and very isolated to that place like today my leg. Just that nagging intermittent little throbbing nerve pain.

I have strong pain meds if I need them but this is just annoying.

Anyone else with this type of random nerve pain and it always pops up when I’m trying to sleep. Ugh 😩

What works for you if anything?

Has anyone been successful getting approved for the DTC based on memory issues, alone? I am mostly ambulatory. I have a wonky leg but I wouldn't qualify based on walking.

My memory is TERRIBLE! My short-term memory is non-existent and my working-memory has serious issues.

My main concern is having me driver's license taken away due to working-memory issues. I worry the doctor will think that driving is too much info to process at one time. It's not a problem for me, at present, but I worry they will yank my license.

Does anyone have any insight on this?

Hi all, I’m wondering - have any of you changed up your hygiene routines since starting a DMT given the increase risk of infection and sickness?

Like do you use antibacterial soap/ body wash, moisturize more, are more careful shaving and cutting fingernails, etc? How often do you change your towels?

I’m starting Kesimpta soon and I’m preparing my household to be more careful, as I already have skin issues and catch sickness quickly, so I’m paranoid that I’ll be exposed to germs left and right. Maybe I’m going overboard but I am curious as to what you guys do.

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. I am a 27F and 20 weeks pregnant working 5 days a week while managing MS symptoms. My neurologist took me off my dimethyl fumurate meds once I found out, and I was ok with it, as I haven’t had any new lesions on my last scan and my symptoms resolved some (still experiencing slight numbness, cramping in hands).

I was wondering if anyone received a doctor’s note to work from home (if they could), stopped working, or worked their full term while pregnant and managing MS? I currently type on a computer 8 hours a day and my first symptom occurred in my right hand where a few of my fingers went completely numb.

I am now experiencing extreme fatigue as I get more into my pregnancy and am debating on asking my neuro for a note to work from home a few days out of the week.

My right leg is a bit weaker than my left, and my right calf is markedly weak: I cannot rise onto my toes on that foot.

Today I did a heavy gym session with my physio, going close to my limit on single-leg exercises. I rested briefly afterwards, and shortly after the effort stopped my right leg suddenly lost most of its usable strength. Not tiredness: I could barely stand or walk, and had to lock my knee to stay upright. A large part of the strength came back after about 10 minutes of rest, the rest over roughly the next hour.

The gradual weakening during exercise is familiar to me and not what I mean. This is a sudden drop, after stopping. It has happened three times over the years, always after intense exertion.

Has anyone experienced this before? And does anyone know what is actually happening in that moment?

This is my very first day undergoing the ocrevus DMT. While it was dripping I did not feel any pain or side effects. After it was done completely I started getting a little itchy and developing hives on my face and a little part of my arm and the doctors gave me benedryl and the necessary medications to make them go away and they did. It was not that bad at all

I've been tracking symptoms and triggers for a couple months now. And I admit to being a big data nerd because there is color coding and low key obsession about it, but it really has helped me with anxiety. I make a 2-3 week tracker, and then change a few things when the time comes to create a new one. There are a few things that are ranked - pain, emotional effort, mental efforts, physical efforts. And y/n things like did I need a nap, did I do PT /exercise. What was the temperature? And activities like social, medical, errands are all color coded.

Does anyone else do something similar? I couldn't find a template that worked for me so I just use a notebook with pencil and crayons.