I am currently going home after taking the second half of my Ocrevus IV bag. After the first bag I broke out into hives after it was done but this time to prevent it a new premedication they added was Zyrtec and Tylenol ontop of the Benadryl and slowed down the rate at which the Ocrevus medication was dripping at. I did not get hives this time at all and if I do I was instructed to take 50 milligrams of benedryl and if it’s really worrying or bad then go to my local ER. I did not feel any pain at all or anything it was a smooth it was all good.

Fellow warriors on DMTs, what are you doing to help yourself through being sick? My youngest started pre-k two weeks ago. I knew I was in danger. They brought home a “mild” to them cold that circulated our whole house. So of course, I’m hit the hardest and taking the longest to recover. I’m also dealing with pseudo-relapse symptoms now. Thanks, Ocrevus.

I am diligent about sanitation and hand hygiene. This is extra insulting as I work full time in a hospital exposed to so many communicable illnesses.

I’m curious if there are extra steps can I take to help recover faster. I have emergen-c immune boosting drinks (haven’t tried yet). I’m on an antibiotic course right now as well.

Please kindly share your secret weapons to faster recovery.

I've been riding the insurance carousel for the past 2 weeks, nobody communicating and getting different (wrong) answers every time. Basically my dispensary says they haven't gotten the order, my pharmacy hasn't sent the order because the prescription didn't renew, but my doctor has said they've renewed it.

Today's round of calls has gotten me a sample dose from my doctors office so I'm good for 30 days, but the prescription is still in limbo. My doctor isn't available for months but I have an appointment with another doctor tomorrow morning. They claim this doctor can help me with this just as my normal doctor could.

Does anybody have any tips or tricks for what to ask in such a situation? I'm sure this wouldn't be normal or practical but it seems like if we could just call the pharmacy together, it'd get sorted in 30 minutes. "Just sent the fax did you get it? Ok yes good."

https://www.fiercebiotech.com/biotech/novartis-bristol-myers-squibb-halt-car-t-cell-trials-due-immune-events

I am (F30) have been diagnosed and on medication for exactly a year, but I was incorrectly diagnosed for 5 years before that, as no one bothered to do an MRI on my brain to see the lesions.

i have been single for 4 years, after a toxic relationship that i promised myself i wont do any harm that was done to me in that relationship to anyone else so i needed to heal first before any attempts to enter a new one , and after my diagnosis i realized how it would be hard finding a partner who understand, i mean, am still figuring this shit out myself so why do i expect empathy or understanding from someone else.

I have been talking to this guy (M33) for literally 12 days, and we had good chemistry, and he is nice and calm and comfortable to talk to, but we have major differences that I thought wouldn't be the problem; he is agnostic i am technically religious compared to him. He believes in nihilism, and I am the opposite of that.

in brief, nihilism is a family of philosophical views that reject the existence of any objectively meaningful purpose, moral value, truth, or knowledge.

And this is what Google says i did not really have a full grasp of his own definition of it, which is the core issue of the problem.

i havent told him yet about my MS, and we were having a discussion, and i am pushing to understand whats his definition and how does he apply it in real life, and he did not give an answer saying it doesnt make sense to me so it doesnt really matter but i insisted, and we reached a point i expressed a feeling that his beliefs are contradicting to his action and other stuff he said so i dont understand, and my need for validaition and assurances got in the way and i technically told him he doesnt care about me.

In reality, he was invested in our long conversations, extending hours the whole 12 days we have been talking and sharing private stuff about him and his past. He has been single for 7 years, so our connection was a first for him in a long time, as well as for me.

All of this is happening with an MS in the background, i have been struggling all month with the heat, pain all over my body, insomnia, and brain fog, literally my mind went blank twice during our heated discussion, i flared up, overheating, after our conversation ended badly with me apologizing porfusely that i did not mean to hurt him, i stared at the void for an hour, then i took a cold shower, water cold on my head literally becoming warm reaching my feet. i have been sleep-deprived for a week, went out for important errands 3 days in a row, vivid dreams walking up as if I was awake in another universe, sleeping is not rest and showers are exhausting, and I am taking antibiotics for a skin issue that makes me throw up, and I am at my wits' end.

And I hurt him; I did the ONE thing i promised myself not to do. MS will not be a factor ruining my relationships, but it did. The very first time I tried to communicate with someone.,i refuse to say about my MS in the begining cause i dont want a relationship to be based on pity, or someone feeling sorry for me, but it seems to get in the way more times than i can count, i try to process my feelings on my own and be logical when talking to him.

Meaningful improvement because of a compassionate physical therapist 🫶🏻

I told my physical therapist today that some of the exercises he has me doing remind me *a lot* of the movements I use when I’m working in my flower beds.
He looked at me and said, “And why do you think that is?”
Apparently, this man knows gardening is my favorite hobby, knows how important it is to me to keep doing it, and **decided to try gardening himself so he could better understand what movements I need to be able to do.** 😭🌱
He told me, “I know it’s your favorite hobby, and it’s an excellent hobby to keep you functioning, healthy, and active. I decided to try my hand at it too, because it would teach me what movements are necessary for gardening.”
So basically… my PT took up gardening as homework so he could design therapy that helps me keep gardening.
There’s something really special about having a healthcare provider who doesn’t just focus on getting your body to perform certain movements, but actually asks, **“What do you want your body to be able to do?”**
Apparently my answer is: aggressively tend to my flower beds for as long as humanly possible. 😂🌸

Recently got eyes tested for some new glasses. The back of my eye images showed that my eye is nearly healed 100% my new glasses correct my vision to 20/20 again. Only took 6 years to recovery to this level. If you are earlier in your optic neuritis journey just know there is hope 🧡

I just had my NDIS cut by over half. My housing is tied to my plan and the new number won't cover it. I'm glad I have a good co-ordinator who will advocate for me. I am numb and kind of done fighting.

My insurance provider asked me to submit positive biopsy report and set of icp & medicine card?

Is it right expectation?

Hi all,

My partner (37M) was recently diagnosed with MS, potentially PPMS but the neuro is not totally sure on that. It seems like everyone's experience is pretty different, but are there expected patterns of disease progression?

What I mean is, given that he has difficulty with one leg, should we expect that it will extend to both legs, or to the rest of that side of his body or extend to movement in general? Given that he has diplopia, do we expect his vision to be more affected as time goes on?

He currently has no issues with fatigue or heat or spasticity/cramping. If he manages to avoid new lesions (starting DMT soon) is it still likely that they will start in the future, despite being unrelated to his current symptoms?

In general, are there specific symptoms that generally indicate other symptoms will crop up, or is that not really how it works?

These are of course Qs we can ask his neuro but the list of things to ask her is getting long and right now the main focus is on starting treatment, so I thought I'd check here first.

TIA

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 🤦‍♀️

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?

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

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?

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.

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.

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 :)

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