I was diagnosed 2 years ago…I spent one full year agonizing what DMT to take. I landed on Kesimpta. I am the kind of person who gets sick from everything… even antibiotics. Kesimpta hasn’t made me sick at all! I feel like it’s a small miracle. I have been on the Bridge program and my one year is up. Uniform Medical has denied all of my appeals to stay on Kesimpta. They are demanding I do step therapy. I don’t think there was ever even a peer to peer, the pharmacologist has not been helpful… all letters are canned and not specific to me. I have EOE and cannot swallow pills and do not want to take copaxone when Kesimpta is working! A “fail” seems like it’s risking permanent damage and is insane to me. I’m so stressed out. Has anyone won this fight with Uniform Medical? Would a health insurance attorney help? Thanks :/

Hi MS Team, has anyone had any luck with psychology funding from the NDIS? I have had my plan change rejected as apparently it is not directly related to my disability?? Even though I have the report etc from the psychologist that talks about my NDIS goals and how therapy will help achieve them etc.

I go to therapy to talk about how to handle the mental grief of not being the person I used to be, or able to physically do the things I used to do...because of my disability

EDIT: Thanks for the MHCP/Rebates etc, I have the mental health care plan but am still feeling the gap payment ($180) each month. I also would like to stay with my therapist. I know, I want my cake and to eat it too 🤦‍♀️

I'm curious to know..... Are any MS people taking GLP-1 for weight loss?

If so, which one are you taking, and are you seeing results?

I've read about the side effects, and all seem to note diarrhea, dizziness, and nausea. I'm not worried about those 3 because I already take tons of RX, and they all have these 'possible' effects.

Thanks for your time,

63 y/o, 12 yrs MS

Damn the fiery arrows that attack the nervous system. Damn the sun. Damn classes.

Stress, heat, a combination of complex classes back to back with a ten minute break in between them to travel back and forth campus. Damn it all. No breaks. No bathrooms. No food.

I, the miserable pissant, become Kafka, and therefore become his cockroach. I, who deserve a life. I, who am stuck to this miserable observational board like a bug, dares to try to squirm before the needle takes place.

In other words; how does one survive college and MS without pissing themselves?

Hi everyone!

Does anyone else struggle when Autumn starts?
I’ve been on Kesimpta for a year. Last Autumn I had a relapse after being on Kesimpta for only 3-4 months. It started with my old symptoms flaring up, and then later a new symptom appeared.
Now, with Autumn starting again, my old symptoms (headache, dizziness, numbness) are coming back along with headaches. Right now I don't have any new symptoms, but because of what happened last year, I'm really scared and I never know if it's a real relapse or not. 🫠
I live in Europe in the mountains, so the weather changes all the time. Summer and heat actually don't bother me at all. But season changes (autumn) always hit me hard.
How do you guys deal with seasonal shifts, and do old symptoms act up for you too? 😩

im 15 and i overthink a lot but my risk of getting ms is high. i smoke/smoked/vape (i do want to quit), im a girl and my dad has ms. im just wondering if theres anyone else in this sub with a parent with ms who also has the same thoughts as me, and maybe we can support each other. im basically my dads caregiver and hes expressed to me before he doesnt want me to deal with this, and im starting to take my vitamin d more regularly again, i took it all the time when i was a baby/little child. idk what my point is i guess im just trying to see if theres anyone else in a similar situation as me where we can support each other and our thoughts or if theres anyone with ms that can give me any advice

I’m 26 and was diagnosed with MS in January 2026. At diagnosis I had multiple active lesions in my brain and one in my spine. I’m on Kesimpta now and thankfully my lesions are no longer active.

I think one of the hardest things for me since diagnosis has been figuring out when I should actually worry about a symptom.

Before I was diagnosed, I had weird symptoms for over a year and kept brushing them off or convincing myself they weren’t serious. Eventually everything below my ribs went numb and I ended up hospitalized for over a week.

So now I’ve gone completely in the other direction.

Numbness? Is this a relapse?
Vision feels weird? Relapse?
Extra tired? Here we fucking go. 😂

It feels like I’m calling my neurologist or ending up at the hospital almost every month because something new happens and I’m scared to ignore it. Thankfully my doctors have been really kind and keep telling me they’d rather I be safe than sorry, especially being young and newly diagnosed. But I don’t want to spend the rest of my life terrified of every sensation in my body either.

Another thing I struggle with is fainting/near-fainting. I’m extremely heat sensitive, almost pass out in the shower, and I’ve passed out/come close to it at work (I work outside). I honestly don’t know when that means “cool down and recover” versus “go to the hospital.” For anyone who deals with this, how do you prevent it and what’s your plan when you feel it starting?

I know the medical definition of a relapse and I understand that heat, illness, stress, fatigue, etc. can temporarily bring symptoms back. I’m not asking Reddit to diagnose me. I’m looking for the lived-experience part of this that I don’t really have anyone to teach me.

For those of you who have lived with MS for a while:

How did you learn what was just your everyday MS bullshit versus something worth calling your neurologist about?
What does a relapse actually feel like for you compared with your normal symptoms?
Do you have a personal checklist before you call? Do you track the symptom and wait 24 hours if it’s mild?
What symptoms make you call immediately instead of waiting?
When you think you’re relapsing, do you call your neurologist first or go to the ER?
Do any of you keep a hospital/go bag or a written plan for what to do if a relapse happens?
What do you wish somebody had told you during your first year after diagnosis?

I don’t personally know anyone else with MS and I don’t have much family support to ask about this stuff. I think I’m trying to prepare myself because knowledge makes me feel less scared.

Mostly, I’m trying to find the middle ground between the person who ignored symptoms for a year and the person I am now who thinks every weird feeling might mean another lesion.

How did you learn to trust your body without constantly being afraid of it?

Has anyone tried AZO bladder control to help relieve urgency? I don’t have any accidents but I do have minor leakage to where I have to wear a liner at all times. I go to bathroom every 30min to hour and it is so frustrating. I cannot go anywhere without bathroom anxiety. I’m going to take an international trip in a few months and I’ve literally watched tik tok on where to find public restrooms in this country and have mapped them out on Google Maps. This is something new for me and kind of defeating. I’ve tried oxybutynin and it makes my brain fog tremendously worse and didn’t really help my symptoms. I figured I’d tried maybe a more natural method as im not sure I want to experiment with other meds yet or try Botox. Or if there are any other natural methods you’ve tried that have helped.

I’m struggling to give up caffeine because of my fatigue. I cannot get through a work day without it or else I probably wouldn’t be able to function to have a job.

I am so exasperated with this entire process.

So I was kinda tossed around from one neurological department to another when I was "diagnosed" (in quotes for reasons I'll get to) a few years back. My MS finding was incidental. I slipped and dented my skull on a wall, got a CT that revealed a cavernoma, got an MRI a month or so later to check that out, and had a single active lesion in my left frontal lobe. I had a handful of small lesions in my juxtacortical regions and corpus collosum, but they didnt seem to think those were compelling. My bloodwork always comes back textbook healthy with the smallest amount of inflammation.

I did have symptoms, but I experienced a good bit of medical neglect and don't always know what's serious and what isnt. I was barely 20 and had developed severe urge incontinence, heat exhaustion, fatigue, brain fog, extreme cognitive slowdowns, etc. The neuro was concerned about the incontinence, but once that stopped and my follow up MRI came back without further activity, she canceled my LP and told me I could start a DMT /if i wanted/, set me up to have kesimpta delivered to my house, and told me to come back in for my first dose when it came in.

I come back with my meds and she tells me she thought she had sent me to a specialist and that she didnt really "do MS". The Kesimpta has been sitting in my fridge since. She essentially diagnosed me with RRMS, it says as much on my charts with her, but told me I'm essentially fine and said the specialist would call me. That was about three years ago.

I recently got a better job and thus better insurance and wanted to check up on things. And around the same time i started to feel like complete shit. My "minor" symptoms have been so intense, but not intense enough that doctors actually believe that they need to put me in an MRI. I live in the american south, so im used to heat and humidity, and in the last 2 months i havent been able to make it from a parking lot to a building without feeling like im going to collapse.

At least a few times a day, i get insane waves of nausea that end when I sneeze. I get random fevers that last between a few minutes and hours, extreme drops in blood pressure, sudden waves of exhaustion. My peripheral vision feels like its way smaller and my tinnitus (that used to be so minor i forgot i really experienced it) has gotten so bad that last week i was unplugging electronics in my house to find what had been buzzing so loud.

These all sound like brainstem type functions, so im obviously very very worried, but my new PCP did not share my urgency about getting me checked on. Either way i have an intake appointment with neurology next week, but god knows how long until an MRI.

I think honestly my point in posting this is perspective from people who have had longer to figure things out (for whatever reason). Is this just what its like? Sound like a new flare? Any general advice on dealing with it qhile the wheels turn?

TL;DR - Equally scared I have a brainstem lesion and that this is just how MS is for me. Any input on either is welcome.

Edit for clarity: The perceptual changes (vision/tinnitus) are constant, most of the things that are intermittent are exertion/heat triggered, but they all happen together (not always all of them, but always more than one). I also have some mild expression aphasia that seems to be worsening, but i just noticed this.

Hi guys,

Hope you are all well as can be!!

I have been on Kesimpta since March - I’ve been wondering what side effects (big or small) you have had. Whether it’s lingered or if you had it for a day or two.

Anything I should look out for? I understand everyone is different and not everyone will react the same way

Sending love to every single one of yous :)

Hi everyone - tomorrow is my first infusion at Kaiser. I think it’s going to be about 3 hours and I was looking at their treatment plan and medications. They offer Demerol for adverse reactions. Has anyone had such bad reactions that they needed Demerol?

I told my mom im planning on going out tomorrow maybe with my friend to go shop or literally just go out and hang out and she started saying no because i need to rest and my body needs to recover and i just got pissed because she been saying that for weeks now and everyone from my family is already babying me and i told her that all my friends are going outside and hanging out and doing shit and im just stuck at home not able to do anything and that its depressive and i told her to stop acting like im gonna drop dead any second and that i dont need her babying me aswell bc i dont need that right now and now i just feel so guilty and dont know what to do.

Hey y’all
I was in class today and my professor was talking about going to the disability office to get approved for reasonable accommodations.
I have no idea what I should ask for besides extra time on exams which I really probably don’t need , but will request nonetheless.

Are there any other good reasonable accommodations I could ask for? Thanks in advance.

Hi, everyone. 28 years with now SPMS. Struggling with chronic spasms and spasticity. 80mg/day of Baclofen with no solution. Has anyone had Baclofen pump implanted? Results? Issues? Thanks for your help.

I am currently on Kesimpta (started in April), also TTC. About 2 weeks ago, I had a groin abscess on my bikini line pop up out of nowhere, had to get it drained at urgent care, super painful. The day after I finished my 10 day antibiotics course, I noticed 2 small lumps in my labia area. I have never had these issues before and have been obsessive about keeping the area dry and clean (esp after the recent abscess.) I’m currently TTC & on prenatals, not sure if this factor matters.

Urgent care doc said if I see another lump, to keep the area clean / apply hot compresses and wait to see if it goes away or opens on its own but no one is taking into account the lack of infection protection immunosuppressed people experience and I am terrified it will take a turn. But also don’t want to wait in the ER or urgent care only to be turned away and told to wait until gets worse or bigger for drainage, I have a toddler. Not sure if I should call my doctor for an extension on the previous antibiotics.

Anyone have experience with this?

I'm going to start off by saying that this question does not involve smoking! Smoking is bad therefore I'm not talking about getting nicotine in that fashion. With that being said, I keep seeing different "professionals" talk about the effectiveness of nicotine with MS but the only studies I found are either done on animals or with a very very small group of people. I have reservations with the idea of it. It's also confusing because I thought nicotine was addictive, some places say it is, some places say it isn't? Does anyone have personal experience with nicotine, whether it be patches, gum, etc, and it's effectiveness?

Hey guys, Ive been diagnosed with RRMS two months. I have all my forms filled out. Just have not had the courage to take the one hour train journey to my hospital to submit the forms for my disability card. Its just my left arm is patchy permanently numb and I am easily fatigued so I dont feel like I am disabled. Would love some moral support and kind words. Thank you.

EDIT: I found the courage to go and I went, just that there was an emergency at the ward during the time so I was told to come back. But phew that relief of what I feel is fear? Amazing

I was diagnosed two weeks after my sudden double vision. I had two lesions in my brain (one active inflammation and one inactive - I have no idea what the inactive one was for) , I was told this is the bare minimum to classify it as MS. I have pending MRIs for spine yet to be done. I was given steroids for 3 days, to help with double vision, and it is improving. Reading all your posts, I feel may be lucky to have lesser number of lesions, but also scared for future. Given my condition, should I go for high efficacy DMTs directly or start with low/medium efficacy ones? My neurologist has given an option to choose between Zeposia, Kesimpta, Ocrevus/Briumvi (of course depending on what insurance allows). Also, any words of advice on how to manage it would be appreciated. Thank you!

Hi everyone, newly diagnosed here.

I recently had my first relapse with numbness in my right leg. IV steroids helped significantly, but the symptoms didn’t completely resolve. During the steroid taper, I also developed new numbness in my left foot and both hands. My doctors said this can happen during recovery and continued the taper.

I’m now 5 days post-discharge, and my symptoms fluctuate — some days/hours feel better, others worse.
I’m also trying to decide when to start Kesimpta. I could delay it for ~2 months to complete more vaccines (especially the 2-dose Shingrix series), or start Kesimpta sooner and accept potentially weaker vaccine responses.

For those who’ve been in a similar situation: was delaying Kesimpta for vaccines worth it? And is it normal to develop new/persistent sensory symptoms after steroids are stopped, even if the initial symptoms improved during steroids?

I’d really appreciate hearing your experiences.

Hi guys, I’m looking at getting this https://www.medigenix.co.uk/icool-weekender.html to transport my medication to the new city I’m moving to this week. I was wondering, may be a dumb question, if it’s ok to take Kesimpta out the box it comes in to put the injections in the slots provided in the cool pack, then once I’m at my home put them back in the box to keep in the fridge? Thanks.

Hey y’all! ❤️

My SO (33M) has a birthday coming up soon, and I’ve already gotten him a few gifts, but I’d love to throw in 1–2 things that are MS-related; something that could make him more comfortable, make day-to-day life a little easier, or just be something he’d genuinely enjoy/use.

What are some MS-related gifts you’ve received (or wish you had received) that you really loved? It can be something practical, comforting, fun, or even something you wouldn’t necessarily think of as an “MS gift.”

I’d really appreciate any suggestions or ideas! Thanks so much in advance. ❤️

Update: I just wanted to thank you all for the lovely ideas and for the feedback. I just wanted to clarify that he will be getting a lot of things relating to his hobbies/fave movies and games/etc, but I wanted to also include 1 or 2 things that may be useful to him that I may not even think about. I appreciate hearing the feedback from those of you who said you rather not get a gift relating to MS and I am also taking that into account as well.

I appreciate all of you for taking the time to respond to me. I'm new, so your advice and tips go a long way ❤️.

I’m debating getting a smart watch.. do you guys have any recs for smart watches that are MS approved? My main things are sleep tracking, activity levels, and heart rate.

I have an iphone but the apple watches are too out of budget rn 😅

EDIT: to those of you saying the apple watch is my best option, is there an app to help monitor “body battery” like the garmin?

1. M.

Hello, everyone. For two months straight I have been so dizzy that I spend about 23 hours a day in bed. I haven’t been able to go to work. I discovered Dramamine a few days ago, and I will say it is helping more than I expected. Could someone give me some insight on what helps when you experience dizziness? The center of my head feels like it has a bumpy ball just slowly spinning, filling my head with pressure and fuzzy sensations. I’m down 35 pounds in 9 weeks. I can’t eat. Neuro appointment is still 4 weeks away, and if I lose another 15 pounds I’ll look sickly. Thank you all for any insight. It is desperately appreciated.

i was diagnosed with MS at 15, i am now 19. i have been getting ocreavus infusions every 6-8 months since my diagnosis. i have recently been having a very severe headache in my left temple for about 2 weeks constantly.
i’m talking never goes away. whenever the pain is at its peak i get very discombobulated and start to mix up my words and stuff like that. my last MRI and infusion was in march so i am confused why this stuff is happening. i was just looking for some advice on what i should do. should i talk to my doctor? i don’t want seem like i’m being over dramatic, but the pain is a 10/10 most of the time.

I(41M) have ppms, im power wheelchair bound, I cant transfer to toilet alone anymore (weak legs , only have right hand with 40-50% strength.)So I either ask wife or I go to my dad's house if wife has something going on that day.

I go to PT, I do exercises to get strength, I exercises at home, don't smoke, but MS makes it difficult to build strength ( or the decline is greater than the building of strength).

So how do people navigate this natural occurrence?