In January 2022 I went to the opticians for what I thought would be a routine eye test. During the visual field check they found I had a right superior quadrantanopia, meaning I was missing part of my vision in both eyes. This led to a referral for an MRI in March 2022, which revealed the true extent of what was happening.

That first scan showed a lot of brain lesions and multiple (8 to my estimate) spinal cord lesions at C2, C3, C4, T3, the lower thoracic cord, and the conus. It also reported atrophy of the left occipital lobe, posterior cortical volume loss, and sulcal widening indicating cortical atrophy. Four months later, in July 2022, a follow up MRI showed three more brain lesions, bringing the total to 20ish within 6 monthsr.

Despite the fact I had never experienced a clinical relapse or remission, I was diagnosed with highly active relapsing remitting MS because of the rapid lesion activity. At presentation I already had mild cerebral ataxia, along with my visual field loss. The combination of heavy lesion load across brain and spinal cord together with cortical atrophy so early on made my case stand out to my neurologist and care teams.

O was started on Ocrevus. While the treatment has slowed new lesion, with only three more brain lesions developing in the first year and none since, it has not stopped my symptoms from steadily worsening. My MS has never behaved in a relapsing pattern. Once a symptom appears it remains, and usually progresses.

Vision was the first problem. I developed constant nystagmus and oscillopsia, where the world shakes. Bright light makes it worse, so sunglasses help, and I struggle when moving between dark and bright environments. When I am walking, recognising people is difficult. I have even failed to notice family members coming towards me. If I am stationary I can usually process who I am looking at, but movement overwhelms me.

Balance and mobility problems gradually followed. My right leg can buckle without warning. Clonus in both the ankle and knee makes locking the leg straight difficult. Spasticity and mild ataxia leave me unsteady, and I have had falls. Busy or noisy places are especially difficult, as the overload of information makes me disoriented and unsafe.

I have also developed problems with my right hand and arm. Tremors and weakness interfere with cutting food, shaving, and fine tasks. Recently carpal tunnel syndrome has added to the difficulties with grip and dexterity.

Bladder and bowel function are affected as well. Constipation is frequent unless I use daily laxatives, and I experience muscle spasms in my right leg. Fatigue from baclofen, which I take at 90mg daily to manage spasticity and nystagmus. My cognition is mostly preserved, but I sometimes mix up word order when speaking, struggle with certain word endings, and find reading aloud much slower than reading in my head. Thankfully, I have no real fatigue either up to now.

From starting with just blurred vision in January 2022, I now live with constant oscillopsia, ataxia, clonus, tremor, dexterity loss, and bowel dysfunction. My right leg shakes that much when I stand i feel it's a matter of when, not if I end up with walking aids at 29.

Anyway, my initial diagnosis of highly active RRMS has now come under scrutiny, finally, and I am being considered for early onset PPMS.

If you managed to read all this thank you. I'm not 100 percent sure why I'm posting this but I wanted to get it off my chest that after close to 4 years of being active on this subreddit, asking questions and drawing comparisons I can finally say it all makes sense. If anyone at all relates to this please advocate for yourself. I had to fight hard to get these questions answered, and to get the extent of my MS damage taken seriously.

I have used Kesimpta almost a year now and I have noticed that when next shot is closing in, the worse my symptoms get and next day from the shot, I feel like a new man.

Do you have same experiences?

I for the past few days whike trying to get better from walking pneumonia I got a sudden sharp headache in the back of my head and immediately vomited and just saw black. Woke up in the floor to my husband and the worst headache of my life. Headache is right at the base of my skull. On brainstem. I have several lesions there. Scared to call Nero. He's not a ms specialist and the closest ones are hours away. Hospitals here are a complete monopoly and they will literally have bodies in the hall. Scared. Don't know if it's stress or what. Anyone experienced this?

Listening to Ed Sheeran's songs and when he sang, "when your legs don't work like they used to before," I was like - that my song.

Fuck you MS.

Just finished my first dose last week, am 28M and was diagnosed at 23. I fought it by myself as best as I could through diet and working out but I finally had to start a round of medication because its just getting to difficult to fight on my own. Has anyone here taken MAVENCLAD and what are your experiences? Because since taking it I feel constantly fatigued like I could sleep all day along with numbness and pain in my hands and feet, and a constant nagging pain in my lower back.

Hello I have had MS since age 19 (2016), though I probably got it around age 10. Therefore, I have basically grown up with this diagnosis. Getting my masters degree, becoming an adult and learning what life is has just naturally been accompanied by monthly infusions, hospital visits, concerned family/friends and so on. Luckily, I have few symptoms that impact my daily life, I just have a lot of tiny symptoms that I learnt to live with (mainly because they have always been there).

However, the last couple of years I have had more and more fatigue. It used to be a couple days here and there with a bit less energy or some dizzy spells. But now (after going back to work after some time off because I lost my job) I am constantly feeling down, dizzy, sleepy and just not up for anything resembling normalcy. I was feeling so much better when out of work, though a bit stressed and restless.

I push through it, hoping it will adjust over time. I have only been at my current job since May, and am always thinking to myself that everyone gets a bit tired from starting a new job. But I just don’t feel that this is normal. I manage to work 7,5 hours every day, walk the dog when home and go work out four times a week. I also push through socializing, but it is such pain. I am basically on the verge of just crying or giving up entirely all the damn time. I just want to do all the things that everyone does, so I do them - no matter if that’s smart of me or not. Everyone around me are just thriving (so it seems at least), so why can’t I too?

So I guess my question is - How do you know what is fatigue and what is normal tiredness that healthy people experience? And how do you even begin to take care of yourself when you should? How does one adjust to the thought of not being «healthy» while surrounded by over achievers and perfectly fine people?

PS: sorry for the long post, there is just too much in this slow and foggy brain.

Hey all... I recently got a new job (3 days ago) and I'm starting the feel the MS fatigue hit like a train, prior I've been out of work for a little over a year due to my last downsizing, but this is making me scared and depressed. I don't know how long I could keep this job, but I do need a job. I go to sleep for a full 9-10hrs or sleep, I wake up tired but thats nothing new. I'm embarrassed and afraid and I dont know what to do... I want to work but the only other job I've had since diagnosed was a WFH job, and idk what to do other than vent and have internal panic attacks.

FYI I've been active as much as I possibly can since not having a job.

I’m so frustrated and frightened right now. I (53 F) was dx with MS approximately 11 years ago. I had zero progression until around a year ago with 3 new lesions (1 on spinal cord). My vision keeps having intermittent problems which has gotten pretty steady over the past week. It gets blurry, I have palinopsia all the time, afterimages with my eyes open or closed. Saw the ophthalmologist last week and my eyes are physically fine, so this is likely brain stuff not actual eye stuff. MRI is later today. 3 rounds of IV steroids were no help. I am beside myself that this is the beginning to the slide towards being disabled. Thanks for letting me vent :)

Hi MS friends,

Have any of your neurologists mentioned dysautonomia? I started getting mottled skin on my lower legs this spring, and my neurologist had me do a whole bunch of blood tests to rule out other autoimmune conditions because it’s an uncommon MS symptom. I don’t seem to have anything else going on that we didn’t know about, so it seems to be another fun MS thing. My neurologist mentioned it as being dysautonomia and just having an affected autonomic nervous system as a result of MS, which makes sense but is a bummer. It makes sense of some of my other issues too, so at least they’re no longer a mystery.

Anyway, those of you with similar issues - how do you manage them? Do you have any advice? Every time I think I’ve gotten used to my MS it throws a new symptom my way and it’s exhausting.

Hey friends, so the topic is on the can, lol. For Americans, 31 °C is 87.8°F. I was super psyched for this job, but now I feel a bit nervous. One of my coworkers is a good friend, so she's in the know at least. My heat sensitivity is bad, especially since I take an SNRI medication on top of this.

I know I'm rambling a bit, but this is my first time working outdoors since my diagnosis (I've strictly done office work or WFH), so I guess I'm wondering if cooling vests actually work, and if so, what brands do you recommend? I'm gonna also try to bring in a mini fan of some sort and make sure I'm well-hydrated.

Thanks in advance!

i wish there was a what is this tag i could put this under. lately ive been feeling my arms and/or stomach almost... jiggle, without moving them. what is this monstrosity that i've become

Hey everyone,

• Back in June I started having numbness in my hands up to my arm and into the left side of my face with some floaters in my eye. I had never experienced these symptoms so I went to the ER. The doctor that saw me told me “you’re a little young for a stroke so it’s probably just a pinched nerve.” Wouldn’t give me any scans or anything just gave me muscle relaxers and sent me on my way. Something about that didn’t feel right to me so I got a referral to see a neurologist that was about 2 months out.

• Over the course of a month the numbness went away and started getting tingling in my right hand/forearm and had a line of blur in my left eye. Over the course of about a day and a half I lost a majority of the vision in my left eye. I went back to a different hospital, did some eye tests, CT and they decided to admit me and order an MRI. Got the MRI of my brain and cervical vertebrae that took about 2 hours, and that morning the attending neurologist told me I had MS. They also did an additional MRI for my thoracic and lumbar vertebrae and a spinal tap that came back consistent with the MS diagnosis. Most of my lesions are in my brain/cervical vertebrae with a couple in my lower lumbar/sciatic area. They put me on IV steroids for 5 days had had me do a taper which eventually brought back all of my vision and the tingling in my right hand was gone.

• The soonest I could get a follow-up with a specialist is September 26th. The doctor I am seeing does specialize in MS specifically and had been involved in a lot of studies/drug trials for MS over the past 10 years so that does make me feel a bit better but this time in between has been filled with anxiety of not knowing and how it may progress. Some days I feel very positive and some days I’m riddled with fear and worry that I won’t be able to be there for my 2 girls (5 & 9) or what my life is going to look like 5 years from now.

-Since this flare up I haven’t gone a day without symptoms (tingling/tremors/spasms/migraines) that come and go depending on what I’m doing during the day. Where I work I’m on my feet most of the time/using my hands typing/writing and don’t necessarily want to tell my work yet so that’s also been difficult feeling this way and trying to keep it private at work so that’s been also fun.

• If anyone has any positive tips/feedback or success stories with your DMT’s or other treatments that have worked for you I’d love to hear it to help keep me feeling hopeful/positive until I see my neurologist greatly appreciated :).

What’s the point of being here if I can only be awake for 6 hours? If during those 6 hours I can’t enjoy what I’m doing due to discomfort or a symptom? If I’m so fatigued I can’t focus on what you’re saying or can only get 3 hours of work in… Anyone else struggle with these thoughts? This is hard and stupid. Life is hard enough without dealing with all the extra that comes with this diagnosis

Hi Guys, I contemplating to sign for pickleplex. It looks fun and might provide some physical activity. The big problem is ataxia, sometimes dizziness and fatigue. I wonder if someone tried it with thoughtful partner and enjoy the activity.

I made sure to take all the meds I would need before taking my final dose of Kesimpta. I’m hoping this is a lot easier than the other two doses 🤞🏽 ! Anyway I hope you guys have a goodnight !

It’s been six months since my diagnosis and I’m coming to terms with this.

I honestly didn’t see multiple sclerosis on my bingo card but here we are , I had to leave my job. I was in a tank mechanic, very hands-on constantly in the heat and moving a lot solving complicated problems and now some days I have trouble remembering what I have to do in two hours, hell sometimes I can’t remember what I have to do in 5 mins… some days I have to remind myself that I’m gonna have days where I can’t do much. I have very bad right side dexterity in my upper and lower limbs, and I don’t wanna say I’m fine with it, but I’m learning to live with it

In more than one way this illness sucks , even though it’s not a death sentence. It’s still a LIFE SENTENCE. It’s changed how I operate daily and in a lot of ways it’s caused me to live a little faster while operating slower. If you can understand what I’m saying I’m still trying to find ways to adapt to this new lifestyle. I’m pretty sure as time goes on I’ll find solutions to problems that I deal with daily. I hate to view it as every day got harder rather I need to find a better way of operating to achieve my day to day tasks. I know everyday someone somewhere is having to deal with the weight this chronic illness has bestowed upon us and to those people.. take time to grieve, I know it hurts.. we all do.. but when you’re ready to take life head on once again and need anyone to talk to or just vent, you can always come here and be a part of the family. You’re not alone in this

Hi friends!
My husband is accepting a new job and insurance through the new company allows him to basically choose which insurance company we want a plan through. Currently we have Aetna and we've had nothing but headaches. They'll pre-approve infusions then months later tell me it wasn't actually covered, I have to then call and argue with 5 people, neuro has to re-send paperwork because they're telling me I need a MS diagnosis (which, btw, is coded in their system under my diagnosed illnesses), half the time when I bring my insurance card our plan and info can't be found and I have to submit after the fact for reimbursement. Horrible experience all around.

So give me your opinion on which provider has been the least pain in the ass to deal with!

Location: colorado, USA Diagnosis: RRMS Treatment: Ocrevus twice yearly infusions with yearly MRI

Thanks in advance for your help!

I was diagnosed four months ago (but likely had undiagnosed MS for a decade according to my MRIs), and had some afternoon fatigue prior but nothing that I couldn't just push through most days. I read a lot of posts in this sub regarding the significant fatigue with MS and really couldn't relate until recently a few weeks ago. Around noon, I would hit a brick wall and I would have this extreme wave of fatigue and sleepiness just come over me. My body would literally crave sugar for some reason all day and I would just binge out on sugary foods all day long. Maybe this was my my body's way of getting energy? I don't know. I would literally come home from work and get ready for bed due to the fatigue and was easily sleeping 8-9+ hrs nightly.

I have now started on modafinil which has been a big help. I still feel fatigued but it's tolerable and much more manageable. I'm not craving the sugary foods anymore.

I just can't believe how the fatigue came out of nowhere. It was not gradual and it feels like it became severe just overnight. My neurologist does not think this is related to my Ocrevus and my last infusion was over two months ago.

Well, I had an MRI on August 22, 2025, and they found three small lesions on the left side of my brain, one of which was active. Then they did a lumbar puncture and confirmed my diagnosis. These small lesions are on the left side of my brain, and I don't know if they explain my symptoms. I'm worried that I might have something in my spine, since I have body pain, but it's migratory; it doesn't stay in one place, but spreads throughout my body, but more in my legs and right lower back.

It doesn't affect my ability to move or play sports. In fact, my symptoms were purely physical and sensory: I had small migratory pains, drops of water, small tingling sensations, small spasms in my fingers and toes, and discomfort in my eyes, like flashes. My symptoms are so strange, and I've had them for six weeks now. They don't get better or worse, they change a little but they're still there. I'm worried that it might be aggressive or primary MS and a relapsing-remitting type.

I asked the doctors if they could do an MRI of my spine, and they said it wasn't necessary for the diagnosis. I'm in the hospital now, and they're going to treat me with corticosteroids to control my active lesion in the brain.

I am very, very scared. If anyone has had similar symptoms, could you give me some advice? And even if there is damage to my spine, does that mean I will lose my mobility? I work a lot with people with disabilities, and being active most of the time is necessary for me. I am afraid that I will not be able to continue working in this field if I lose my mobility one day, and I love my job.

I got diagnosed not even a year ago when I turned 20. I’m 21 now and trying to get back into my normal life. I am in university and even attending an IT school from home. My mom just says I am lazy and not proactive enough when she doesn’t understand how exhausted I am. Sometimes I could sleep the whole day if I wanted but, I’m trying. My family was caring during my first relapse but, I feel like that faded because they don’t see my physical symptoms as much. Honestly feels like I have depression but, I don’t know if I want to get onto medication for that due to prior experience. I feel extremely stressed knowing she does not understand what I’m going through or the extent of it. I’m unmedicated at the moment but waiting for my first infusion in a couple weeks. Does anyone have advice for how to cope with this? Just feeling unvalidated and lost 🥲

I work for a large public employer so, I’m very lucky to have some protections but, still…. I worked for a large public employer in a different state before and they refused to accommodate me (work from home) so I had to resign, filed an EEOC complaint, got a right to sue (for those that don’t know, they don’t really carry that much weight) couldn’t find a lawyer. Didn’t have the time or energy to pursue a lawsuit on my own but, that whole experience has scared me. I was with that employer for over 10 years, glowing evaluations, awards…. Then I got MS.

Anyway, on to new job I’ve been at for almost 2 years.

I got a new boss about a year ago. I feel like she wants to get rid of me because of my 4/5 day work from home accommodation. I say this because she started nitpicking my work and suggesting that maybe I’d do better in person “where the action is” and I was like o… no… absolutely not. If I’m making mistakes maybe I should be home 100% because offices are way too much of a (among other things, like a Petri dish) distracting energy drain.

Since then it’s been nitpick. Nitpick. Nitpick. To the point I was like yknow… I also have a diagnosed mild cognitive impairment (that seemingly no one notices but me, I sought out the test because I felt it). So then I got an accommodation for that like extra time, clearly written instructions, because that was another thing she’d do - to tell me to do something and then tell me she wanted me to include another piece of information that basically had me go back and redoing the whole thing, I can never get ahead or caught up. It’s super demoralizing.

Then I got e. Coli in early July. Multiple urgent care visits. Multiple times being told they don’t treat e. Coli with antibiotics and also not to use anti diarrhea medication and it should pass through.

Guess what, it HASN’T. I’ve had explosive poop with the occasional sneak attack at least once a day for a month and a half. I’m seriously thinking of putting an “e. Coli survivor” plaque on my toilet after this is all over.

I am blaming MS for the lengthy E. coli and now worried it’s triggered something else so I’ll be getting my first colonoscopy & endoscopy in early September.

So, I was working 100% remote because I’m not supposed to share a bathroom and, not to mention, I didn’t want to poop myself in front of my coworkers or driving to work.

Finally got on antibiotics. The antibiotics made me nauseous. I had to go pick up (while masked and sanitized) prescription anti-nausea medication where I must have miraculously picked up Covid 🤦🏻‍♀️

So then I took 2 days off last week. Tested positive on Friday. I got an antiviral (not Paxlovid, something else and it worked sooo much better than Paxlovid did when I had it before).

Then I thought my stomach was getting better which made me sooooo happy.

Until today, because I actually ate food yesterday (little to no appetite with covid) and then we were back up to 1/2 dozen times on the toilet today.

And I had my regularly scheduled meeting with her where I was a complete poopshow because she had asked for me to get something done, my little pea brain got so overwhelmed coming back and trying to get my bearings again, cleaning up, organizing, going though email, following up on any outstanding tasks when she told me to do it I was like OK! And this isn’t something I’ve done in a while (almost a year) and we’ve switched systems and so when I started diving into it and hitting problems it was like my brain shut off. I could not think. I just got so anxious about getting it done the anxiety overrode my prefrontal cortex. Also didn’t help with the explosion poop since anxiety seems to exasperate that so, all around an epic spiral to the point I thought about taking another sick day but nope! I soldiered on through only to be berated…

And then we wrap up the meeting about me coming into the office tomorrow and I’m like oh yes, I tested positive for Covid on Friday and she’s like, “what does that mean?” And it’s like… idk. I don’t know what to say anymore. Covid guidance is like out the window. I never had a fever. I’m on an antiviral until tomorrow like… and then it’s like I don’t know about my stomach. Maybe it is getting better? Maybe today it was just off and maybe it’ll be better tomorrow? I just don’t know and I feel horribly guilty… not that my presence in the office means anything because we’re remodeling and most people are remote. Everything I say sounds like an excuse. So she told me I had to get my accommodation updated because she said how we thought this would only be for a short time and it’s like yes. I know. I thought so. The urgent care doctors thought so. Like I don’t know what to tell you and now I have Covid and Covid rates are increasing and we’re going to start going back into cold and flu season (I’m typing my inside thoughts, not my professional tone responses).

So then it’s like yep, there we go, right back to where I was with my last employer where I said I had to work 100% remote because it’s thing after thing. That last employer gave me so much anxiety though at this new employer I was really trying to go in more but, I just can’t.

Arggggghhhh.

Thanks for reading :-)

Hello everyone,

I am in my first week of taking Kesimpta, I took the first shot on last friday, but I got a bit cold the day before yesterday and today morning I woke up with a sore throat and some tonsil pains, can I take my next shot in Friday? I am pretty new to this and I'm kinda worried.

i’m suffering from a pseudo flare right now because of the extreme heat in where i live (i hate where i live lol) my hand dexterity is already bad but add extra neuropathy and my hands like stop working. i was eating yogurt in the morning from a bowl with a spoon & 50% of the yogurt ended up ON me instead of in my mouth because i kept dropping the spoon or missing my mouth. i’m 28F & very single lol not sure of anyone who’s going to want to have a partner w the hand to mouth coordination of a toddler

So I was diagnosed with RRMS earlier this year. Today after I got home I noticed my thumb shaking but only if I turn it in certain ways. I can turn it in one way and it will stop but if I lift it up it will start again. It doesn’t hurt but it is just something that has never happened before and has been going on for a couple hours.

I was diagnosed with the disease about 2 years ago. I've learnt a lot about it, through my own experiences and reading other peoples' on the internet.

Just when I start to feel comfortable with what I know and with the disease itself, a reminder slaps me in the face of how big of a deal this really is.

Just got hired at a pretty snazzy place and during one of their sessions on disability awareness, MS pops up. It was categorised under neurological disability.

And I get it, not everyone faces the same disease progression and I'm pretty privileged to be able to afford the best drug available to me right now (ocrevus) but oh boy, does it hurt.

It hurts to be reminded of what I thought my life was going to be and what it turnt out to be. Ofc, I acknowledge all the ways in which I could've had it worse but I can't stop myself from feeling a little bit sad.

Maybe I'll live through another medical breakthrough where MS will be an even smaller issue but oh, boy does it scare me. The possibilities of disease progression, handicap and lost relationships.

I do believe there's a community for everyone but the idea of having to lose the one you have now and having to establish another one for yourself in the future is scary to say the least.

Don't know where I was going with this but just had to put it out there.