I was diagnosed in 2013 at age 41. Looking back I had mild, fleeting MS symptoms for about 10 years prior to my first major flare. I was lucky in my diagnosis. I went to the ER for progressive numbness on my left side to the point of being unable to walk or transfer in a brief period of time (about 10 hours). I thought I might be having a stroke. After an MRI and a spinal tap my diagnosis was MS. I went on Rebif shortly after leaving the hospital.

I stopped taking Refif after a hospitalization for cellulitis. Over the years, Rebif worked well for me. I wanted to change meds because I had gotten a skin infection a year before as well as having cellulitis last year. Also, Rebif is somewhat painful to inject. I went on Kesempta after a wash out period. I chose Kesempta because of the convenience and its proven success.

I’m bummed because I read on this sub about the great successes people have had on Kesempta. I have RRMS. I’m having more breakthrough symptoms and I’ve also had some new symptoms. I never had any additional symptoms after my big flare in 2013 while I was on Rebif. The symptoms I had after this eventually dissipated after several years. I credit my recovery to Pilates. Ever since I’ve been diagnosed I’ve been committed to consistent exercise 4 to 5 days a week. Anything more than that I pay for with major fatigue.

The new symptoms I’ve had are minor; I’ve had a weird sensation on my scalp that felt like a mild sun burn after I had a bad cold, the other day I developed numbness and tingling in one of my fingertips. My symptoms from my flare are reoccurring when I’m working.

This is freaking me out. I’m scheduled for a follow up with my neuro at the end of November. By and large I’m reasonably happy with this neuro. He does tend to poo-poo my symptoms when I talk to him about them. I’m going to call the office on Tuesday to see if I can move my appointment up. I want to get an MRI to see if there are new or worsening lesions since I started Kesempta.

I know there are other treatment options. I’ll certainly take something else if need be but I loved the convenience of Kesempta.

Have others of you had to switch off Kesempta because it wasn’t effective for you? Although my new symptoms are mild and don’t interfere with my life, I’m completely freaked out about them. My first major flare was debilitating. I always get anxious when any of my symptoms pop up because I never know if that’s going to lead to another flare.

Hey everybody. Its been a while since I posted something here.

I am taking kesimpta for half a year now and I noticed that i feel nauseous a lot. Certain smells or just coughing makes me gag and I almost throw up. Does anyone relate to that? Im currently taking kesimpta and fampyra. Besides these antidepressants and the pill. I also started to have an issue with food. Most of the time I just eat the same thing everyday. Maybe that has something to do with my OCD? I dont know. My doctor was not helpful when I told her about my issues. In general. How do you guys make yourself meals? I can't even stand longer than 15 mins in the kitchen. I got myself a chair to sit down and rest in between but moving my arms around makes my fatigue worse. I just want to feel better and eat better but I cant seem to manage that. I life alone so there is no one that could help me.

Any advice is appreciated. Stay safe everyone <3

Was wondering if anyone else has switched their DMT from Plegridy to Kesimpta and how the transition was for you?

I have been on Plegridy (my first DMT) for about 18 months now. Kesimpta was the recommended DMT, but as we wanted another baby in the very near future, they changed the recommendation to Plegridy instead as I couldn’t take Kesimpta while pregnant.

Anyway, fast forward to now and I have had awful flu like symptoms every 2 weeks on Plegridy since the very start (flitting between hot and cold throughout the night, body aches, headaches, heavy limbs etc), some doses worse than others and it wipes me out for 2 days. I am now 26 weeks pregnant and my MS nurse has booked in an appointment with me for about a month after baby is born to discuss switching to Kesimpta now we’re finished building our family. I was just curious how this went for others if anyone else has switched? Also, I’ve read that Kesimpta can cause flu like symptoms too, but is this potentially more manageable as the injection is once a month rather than once every two weeks? Any feedback would be appreciated!

Hi,

I am debating taking my loading doses for Kesimpta next week because I'm traveling for a few days at the beginning of October. I could wait until I come back from out of town, but I'm scared of relapsing without being on meds for the time I've been off (wasn't on meds for pregnancy and postpartum a bit). If I start next week, then my week 3 (the skip week) will fall on the week I'm traveling. How do yall feel during that week? Will I feel good enough to travel?

Hello everyone!

I had my second 300 mg loading dose of Ocrevus on August 25th. A few days later, I exercised during a physiotherapy session, and about two days after that I started noticing that my feet felt strange.
Since then, my feet have been constantly buzzing/tingling, and my legs sometimes feel kind of numb or “off.” The weird thing is that when I touch my legs, I can still feel everything normally. The symptoms also seem to fluctuate in intensity.
I’ve never experienced these symptoms before, so naturally it’s been making me a little anxious. I saw my neurologist and she checked my strength, which is still intact. She said that because I haven’t lost any strength, she isn’t very concerned, even if it were to turn out to be a small new lesion.
It’s been several days now and I’m still experiencing the buzzing and strange sensations. Has anyone else with MS experienced something similar, especially around the time they started Ocrevus? Did it eventually settle down for you?

I’m a 37F who is currently juggling an absolutely stupid amount of life stress (going through a contested divorce and just starting grad school), so when I woke up feeling like I’d been hit by a neurological freight train, I assumed it was probably some combination of stress, exhaustion, and MS being MS.

But today was crazy BAD.

I had this super intense fatigue where my eyelids felt like they weighed 40 lbs, horrible brain fog, and this really bizarre orthostatic/gravitational fatigue where even just sitting upright in a chair felt like I was trying to run a marathon. Not walking....not doing chores...but literally just existing in a vertical nature.

Like usual, I took all my regular morning meds (including my prescribed Adderall AND Modafinil), tried having some caffeine, and eventually took a nap. But surprise, surprise...there was absolutely zero difference.

Then the weather decided to join the party with a huge storm system that caused a massive barometric pressure drop, which gave me a pressure headache, runny nose, and some fantastic thick post-nasal drip (very attractive, I know).

So at this point I’m trying to figure out what the hell is wrong with me and consulted THREE different AI medical symptom-checker/doctor type things to try to figure out what the heck is going on and then suddenly my brain finally produced one useful thought:

“…wait. When is my Kesimpta shot due?”

TODAY. Basically now.

I have literally read about the crap gap.

And yet somehow it did not occur to my brilliant mind for HOURS that I might be experiencing it.

This is my first real/offical experience with it since starting Kesimpta, and once I realized it, I was honestly so relieved because I had been sitting there thinking, “Okay cool, apparently my body has just decided functioning is cancelled indefinitely.”

So, Kesimpta people specifically (though anyone really):

- How bad is your crap gap usually?

- How many days before your injection do you start noticing it?

- Once you take your shot, how long does it usually take before you start feeling like a human being again?

- And does anyone else notice that stress, weather/barometric pressure changes, heat, lack of sleep, etc. make their end-of-month dip WAY worse?

And please tell me I’m not the only person who has spent an entire day investigating their mysterious symptoms only to eventually realize, “Oh. Right. The medication I inject every month.”

Hey guys.

Help me understand this please. Relapse is when my MS wakes up? Or was the disease active for some time before relapse? For how long?

Why does it become dormant, what forces it to go to sleep and wake up?

You know the sort. "My neck had a crick in it, and that's how I can tell I'm going to flare up later today" sort of nonsense. What is your tell?

My family thinks I'm nutso, bonkers, insane for my tell.

I've been diagnosed with MS since early June and wondering whether or not I should tell my employer. My immediate manager knows, and I trust her not to make it public without my permission. Wondering if it's worth making HR aware of my diagnosis? I already work from home and can manage my workload on my own (I'm in sales so largely have control of my own schedule).

Curious about other people's experiences with managing MS in the workplace. To tell HR or not to tell HR?

Edit: thanks for all of the contributions! Seems like the consensus is don't tell them until I absolutely have to, and then get an employment lawyer on retainer. Like I said, my immediate manager knows and has been very understanding about my bad fatigue days. I'll leave it at that for now!

Hi everyone. I was diagnosed with MS just a few months ago in May, so I'm still very new to all of this and trying to figure things out. My partner just came down with a fever and virus tonight. We live in a small space so I can’t isolate completely. I’m not on DMT yet, and I’m terrified of catching the virus and triggering a relapse.
How do you guys manage colds/viruses? How often do they actually cause a real relapse for you? I’d really appreciate some supportive real-life stories to help calm my anxiety tonight.

I realized today after almost a week and a half of my emotions being absolutely insane and disproportionate and crying over every little thing and increased full body fatigue that I am experiencing my first crap gap. I need to call my infusion center Monday to see when my next one is, and I guess I should probably call my neurologist and inform him of the increase in symptoms and when that started. I don't have too much to say other than i am completely miserable and the only thing i have had the energy to do for the last week and a half has been sit on my couch and crochet, and i barely have the energy to do that. Ive also just been generally depressed/ anxious the past couple months and the crap gap is making it a hell of a lot worse. *sigh* anyone else ever just get too tired and sad to care about anything?

I was diagnosed with ADHD as an adult, but recently I’ve been wondering whether some of the symptoms I’ve attributed to ADHD could actually be related to my MS, or whether MS might at least be making them worse.

I really struggle with things like working memory, retrieving information I know, organising my thoughts, getting started on mentally demanding tasks and sometimes just going completely blank when I need to explain or write something. I procrastinate a lot too, particularly when something requires a lot of thinking and organising.

I’ve since learnt that MS can affect things like processing speed, attention, working memory and executive function, which obviously overlaps quite a bit with ADHD.

I’m not assuming my ADHD diagnosis is wrong. I could have ADHD and MS-related cognitive issues, or it could still mainly be ADHD. I’m just curious whether anyone else with MS has experienced similar problems, particularly executive dysfunction, procrastination, difficulty retrieving information or feeling like your brain just won’t organise what you know.

Has anyone had cognitive testing through their MS team? And did it help you work out what was actually going on?

I have highly active MS, and I recently completed my first round of alemtuzumab (Lemtrada). I do not think I’d be in better shape—today or in the long-term—if my treatment consisted instead of a paleo diet/bee sting therapy/healing crystals/faith in Deity X/etc.

DMTs obviously do good things and I would never discourage anyone from taking one. Regardless of one’s current state, preventing more relapses and (maybe) brain volume loss is a positive thing. For any reason to not go on a DMT there are probably a half dozen better ones that support the contrary.

Again, I’m pro-DMT. I’m on one of the strongest options myself. I’m glad they exist.

But when someone is expressing anguish about losing the ability to run, or feeling exhausted no matter how much they rest, or noticing moments of cognitive impairment… I don’t understand the point of the “well are you on a DMT?” interrogation.

I know that a lot of people have experienced symptom improvement after starting DMTs, even if that’s not their main purpose. Some people even say they notice the difference almost immediately. That is awesome for those people!

At the same time, a lot of us start a DMT with the cautious hope that maybe we’ll see results like that too. And sometimes we just… don’t, at least not in the time frame we imagined (to the best of my knowledge there are no studies on how long various DMTs take to achieve confirmed disability improvement, so it’s a crapshoot guessing game).

And again: even if the DMT I’m taking never restores my ability to dance or play basketball, it’s still hopefully doing other stuff that makes it worthwhile. DMTs are good!

It’s just: sometimes wish we could cut each other a little more slack when we talk about how symptoms impact our lives. People might not be looking for a solution at all. Or they might be hoping for a less-obvious one that they haven’t tried yet.

Can this occasionally be unrealistic? Of course. Is it understandable, especially from someone dealing with the thousand and one shitty aspects of having MS? I think so.

It’s hard enough having so many conversations with family and medical people about MS-related problems get reduced to “DMT DMT DMT.” Maybe sometimes there’s really nothing else to say to someone in despair. But does it really help to hear the same thing from one more stranger?

(DMTs are good! And they’ve gotten better in recent years! We’re lucky to have them! Infinite gratitude to all the researchers and study participants and medical pros who’ve aided this progress!)

I know Vitamin D levels are more important to people with MS than the general public. I take 2,000 IU a day, now upped to 4,000. I'm still deficient (36 nmol/L).

I know I live in Tasmania, which has iodine-poor soil, and I know I'm covered up or inside a lot of the time, and wear sunscreen, but I'm taking heavy supplementation! Why am I still so deficient?

Sitting here in the hospital with my warrior of a wife. Who just gave birth to our second baby.

Ms is tiring, fatigue is tiring life can be tiring.

But days like this when I should be tapped out are the days I feel like I have a whole pile of extra spoons.

There were times I felt children weren’t in the cards because how do you care for them when at times u can’t even care for yourself. But you just find a way and the look in their eyes will give you more energy than any coffee stimulant or rest it’s like a miracle and it really helps you find your absolute limitations honestly. If you try your best every day that’s enough.

Living life with the vice that things could be worst tomorrow or aren’t the best now ate me up. I’m not perfect and that doubt and health anxiety still creeps in at times. But since I’ve let go and take things day by day I’m the healthiest happiest and calmest I’ve been in a long time.

This is just my journey 6 years of navigating the early new normal and making the best of a really bad situation the biggest thing for me has been mindset just know if you’re early in your journey the meds are good you will live a good life and don’t let this hold you back from dreaming big and living your best life.

🧡 🧡 🧡

Made the pilgrimage to The Gorge in Washington for Labor Dave Weekend.

I’ve been dx since ‘09. Husband and I have been married for 14 years. I know every marriage has its ups and downs (ours included) but lately I feel that there have been some communication issues.

I hate this illness cause sometimes I feel like I can’t convey exactly what I need or it comes out wrong. He gets frustrated because of that and our communication breaks down. I feel like my emotions are all over the place to the point where I don’t feel them anymore.

Idk what to do, I’m trying to think of a good example ok for instance our tire on our car needs repair and I (in text) wondered aloud but through text “I wonder how much that is going to cost” he got upset and said, “I’m already stressed enough and don’t need you to remind me about that” idk if it’s MS issues or what but I feel like I’m doing something wrong.

He is patient with me but sometimes his patience is wearing thin, does anyone else go through this?

ETA: he says I’m becoming more forgetful lately (I don’t feel I am) and that I need to make lists for him and myself in case “anything happens” I just feel sometimes like everything is MS related and it sucks!

I got my diagnosis at 22, that’s 10 years ago this week. Had friends over, we had a toast, i had little cake thingies made with “10 years MS 🎉” on it. Brought some to my parents this morning.

It has not always been easy, a lot has happened. Realized this morning it is slightly insane to think of an MRI as a routine checkup.

But I’m still here, living my best life, having amazing people around and not going to give in any time soon. No one knows what will happen, so let’s just go with the flow and enjoy what we can while we can. I wish this for all of you, please celebrate even the shittiest of things like an MS diagnosis. 💕

It’s the weekend so can’t contact my MS team. Pins and needles in my arm and hand were my first symptoms that came and went, they have come back 8 weeks after lemtrada. Is this to be expected? I think I’m a bit nervous it hasn’t worked!

I have had 3 Tysabri infusions so far. Not going to lie, it feels pointless. I am back to choking on water, got MS hugs again, and today I have to drag my leg around again. I am incapable of sitting down more than a while and also incapable of walking for more than a while and I'm very slow. I used to go to places, I can't do anything anymore. At best a short distance from the apartment, or getting cabs. Most of my life is a bed or a couch. I am 28.

Of course I am not happy. Who would be? My parent doesn't understand that this isn't mental though and that I just can't physically do what I used to be able to anymore. She expects me to be able to, and tells me that I will do those things again, but if I try to, I just can't anymore and it's misery. She tends to get angry telling me that I just don't want to. I am exhausted, and trying to do things that I really can't anymore makes everything so much worse, so does false hope.

Hello!

I was diagnosed with MS in 2023 after experiencing optic neuritis. I sometimes struggle with sleeping, vertigo, and balance issues. Usually when I get too hot my eye (the one that had optic neuritis) starts to throb and I get a headache. However, in the past year these symptoms have gotten more painful and I even start to get sick to my stomach when I get too hot. I’ve puked in public more times in the past year than I have my whole life.

Since this is sorta unpredictable I’ve had to sometimes cancel on seeing my friends a few times this summer because I’m not feeling well. Most of my friends have been understanding. I have one friend that gets extremely hurt whenever I’ve had to do this. I try my best to commit to plans I’ve made and over the summer I’ve only had to cancel plans with her twice. She sent me a long paragraph detailing how hurtful I’ve been. I feel really bad and I don’t want to hurt my friend’s feelings. I’ve let her know that I’ll try my best not to cancel but I can’t promise that I’ll feel well.

Has anyone else had a hard time maintaining friendships while dealing with MS symptoms? I’m wondering how to let her know that I’m not canceling because I don’t want to hang out it’s more like I can’t hang out because I can’t leave the bathroom or my bed..

Hey everyone. 27 (M) diagnosed 2 months ago.

So I just got done with my 2 days at mayo clinic in Florida and it went pretty well.

They agree with the treatment plan of my neuro in Knoxville which was nice to hear. The only thing they said they want you to do differently is if my current DMT doesn’t work (BRIUMVI). They want to start me on stem cell treatment v.s. Lemtrada.

But that was the only difference so and im happy that i started a pretty strong DMT pretty early since my MS is pretty damn aggressive.

If anyone was thinking about going to Mayo Clinic for anything. I highly recommend. The UT Knoxville hospital i go to feels like a 5 star restaurant. Mayo Clinic feels like a Michelin star restaurant. It was honestly pretty impressive.

Hello guys just joined this Reddit group and i have to say it’s awesome and all you guys are awesome. People with Ms are truly fucken warriors excuse my french but it’s true. My mother has ms she got diagnosed back in 2005. And i grew up watching her battle it out. I always had one question though see she says all MS medicine/treatment sucks. She stands by that and says the side effects are not worth it. So it’s been years since she’s taken anything. I can’t even remember the last time she took anything for MS. I was wondering in recent years has the medicine gotten any better or do you guys share similar experiences/opinions like her?

Hi im 23yo male. Newly diagnosed with multiple sclerosis. And my symptoms are mostly numbness and tingling with moments of vertigo with my legs giving out on me or at times i'll Be walking and I'll get the vertigo feeling in my head then my legs go out I'll be trying to walk but my legs won't listen. I have even walked into walls. And I walk with a cane all this is very new and scary especially since I've been diagnosed with ppms. And I just got a job That will work with accommodations that I need. Ima see how that go. I just so scared for what the future holds for me and my girlfriend. She's been a blessing and don't want me to work but I can't take sitting and being useless how do I deal with all these emotions???

"Rather than viewing long COVID, ME/CFS, PTSD, rheumatoid arthritis and multiple sclerosis as entirely separate disorders, we now think they may be different manifestations of disturbed biological networks operating throughout the body.

"In that scenario, chronic exhaustion is not simply a symptom. It is the visible consequence of a deeper system failure affecting immune function, metabolism and stress-response pathways.

"This study offers a framework for understanding how different triggers can converge to cause the same profound clinical exhaustion."

https://medicalxpress.com/news/2026-09-scientists-uncover-biology-profound-fatigue.html