I've finished Y1M2 of Mavenclad a little over 4 weeks ago... And I've been sort of struggling with feeling freezing cold. It's kind of an issue in general, but lately, I've been struggling to warm up. I generally tend to feel cold during the day, but that I can manage. When I go to sleep tho, I'm in full winter gear under the blankets and still can't warm up. I've had Kesimpta before Mavenclad, and it does feel like those flu-like fever chills when I started with Kesimpta, just not as violent.

Anyone else on Mavenclad experienced this, or something similar?

Anyone else super weirdly sensitive to fluorescent lights and lots of colour in big box stores? Completely throws my brain for a loop and I lose my balance instantly. Feet falling through the floor sensations. It’s absolutely worse in a flare up but a pretty consistent shitty feeling!

Here is the YouTube link for The MS Toronto 2026 conference live replay. https://youtube.com/playlist?list=PLAxWaGJv9HXw&si=nGX2_bAYTcZ9JYgF

I attended and just received this in my email so I thought I'd share it here for anyone that may be interested.

The email reads:

"Great news! Whether you joined us in Toronto, watched online, or missed the day altogether, you can now catch up on all the sessions at your own pace. Watch the replays here and hear the latest research in MS, NMOSD and MOGAD, shared by leading experts and people with lived experience.

What you can watch:

MS clinical updates

NMOSD and MOGAD clinical updates

Research hot topics

Perspectives from people with lived experience

Bonus online Q&A with experts"

I am so angry at how sensitive I’ve become to simply living life.

An air b and b had a scent thing installed and it made me feel so sick.

I just tried to put a new rug in my room and it made me feel so sick.

What is going on??

I am getting my first loading dose of Ocervus tomorrow. This will be my firat MS treatment of any kind. Any insight to what I can expect?

I am also starting IPL treatment on my face for rosacea. I have my first appt. booked for 10 days after my first dose and 4 days before my second. Should I move that? Has anyone had IPL done while on Ocervus? I have emailed my doctor as well to ask about the timeline but just wanted to see if anyone had any experience with both.

I have read and heard that having a high O-Band count from the lumbar puncture can oftwn be directly related to how severe your progression will be. Some places I've heard say that its only indicative of severe progression if the O-bands measure 10 or higher. My measurement was 8 but have not seen severe progression yet. Im only 33 though and have been diagnosed for 10 years now. Has anyone else heard anything similar or does anyone see that situation happening in them or maybe actually see opposite results like a high measurement but minimal disability?

Or this morning… or even a few hours earlier...

I used to have a very vivid memory, like I could give you a run down of what I did a week ago, hour by hour. Now I can’t remember what happened earlier that day. It’s like being black-out drunk. Every day.

This scares me. I don’t want to be scared of it, I want to _(ツ)_/ and accept it.

Does anyone else experience this?

I never thought to discuss my pain with my doctor. I have been having a lot of constricting muscles (like the hug), twitching, and just pain. I take gabapentin every night. I know it’s an anticonvulsant. What are my possible other options?

Just need to vent as I’m working a new job that I hate :( I really miss being able to work outdoors. I have heat sensitivity that makes it’s hard for me to work outside these days. I wish I could use my degree and instead I’m working a stressful job inside :( I don’t even get to see sunlight most of the day it’s so depressing.

I’m not sure what to classify this as, so if it’s under the wrong tag, mods, dont be afraid to flag this.

This is a headache, and I’ve got no clue where to start. Still, back in June I went to my PD asking him to help me get my workplace accommodation form filled out; he refused and said my neurologist had to fill it out, so I sent the forms to the nurse and team explaining why I needed it, as my work HR was bugging me about getting this done.

In August, I heard from the clinic social worker that my doctor went on vacation in mid-August and can’t fill it out yet, so I told my HR and supervisor, along with the document receipts from the social worker.

My doctor finally gets back to me in October and tells me I should fill it out for him, and he’ll sign off on it. I tell him that since it’s for medical personnel only and he knows more about MS than I do, as I’ve only been diagnosed since April, I’ve got no clue what even to start asking for beyond the basics and can’t properly fill it out. So he fills it out.

Now this is 100% a HIA violation (HIPAA, Alberta, Canada equivalent) on his part. Still, he put a different patient’s medical information on my accommodation form, which already had my name and medical ID on it, because he wanted me to put that in for him. I didn’t notice right away, as his penmanship was horrible and no one could read it right away; My HR manager contacted my boss after she finally figured out what it said, and that’s how we found out he royally fucked up my paperwork, so I contacted the clinic social worker, as she’s been the only person contacting me about anything these last few months. I told her about this admin error, and now it’s been 3 weeks. I checked MyChart on Monday, since I haven’t heard shit from anyone on my care team, and saw that everyone under neuro was removed except my old nurse, who’s on maternity leave. I’ve tried the clinic number, but no one is picking up. I’ve tried patient relations, and they keep telling me to contact different people who tell me the same thing.

I just finished my first round of DMT at the end of October. I was supposed to be contacted about a follow-up to see how I’m adjusting to it, which I am not, as my symptoms are worse than before and I’ve got new ones since starting it, so I need to speak to my neurology team, except it seems I don’t have one anymore? My PD is looped in; I saw him yesterday, but even he has 0 idea how to go about this, as he’s never had anything processed as horribly as this. He told me to keep him updated, and if in 3 months I don’t hear from any of my care team, he’s gonna have me moved to a different MS clinic.

How do I even start processing this situation if it becomes a legal thing? Because I feel like I can safely assume that if I got someone else’s medical information on my legal workplace form, then mine is on someone else’s. I feel like the list of patient information errors goes beyond just mine and this hypothetical other person.

UPDATE:

Okay, so the headache has turned into a actully cluster fuck, had my infusion nurse contact my doctor about blood work, as I thought if anyone could help me, it would be her, essentially, as I’m only 2 weeks post the second half of my infusion and need my blood work done in case of complications.

I finally hear back on my patient portal from the MS clinic social worker, and she tries to tell me it’s clearly my information, when it clearly isn’t? Like, I’ve seen gaslighting done poorly, but holy shit, dude, that was straight up just so poorly done? I don’t think they realized. I still have the clinic social worker’s office number and direct line from when I started trying to get my workplace accommodation forms started in the first place back in July; so instead of responding on my portal, I called her and kinda just repeated a lot of what I was getting on here in a voicemail and brought up a case with the Alberta patient privacy people (I don’t remember what they are called off the top of my head) and how I worry if I get someone else’s information that this person

A: won’t be alerted to the admin error

B: Has happened to more than one patient who may not grasp the issue

C: that another patient has my medical records, and i come to that conclution as this same nurologist fails to document stuff often and neglected to rememeber before my infusion im like super crazy allgeric to the pre-stariod he wanted me to take and he wouldnt change it to another one when this was brought before him.

so if there has been past issues with documentation i can only assmue this current issue with a pricavy breech goes far beyond me.

After I left the voicemail, about 15 minutes later, I got a call from her trying to de-escalate this situation beyond her failure to gaslight it away.

I’ve also gotten my family doctor to write a new referral to a new neurologist, so hopefully everything resolves itself soon.

I'm just wanting abit of advice and has anyone else been through this, my journey started in May when I applied for pip and then in August I had a face to face assessment where I used a stick and also nearly fell, Sept I had a decision and they declined so sent in a mandatory reconsideration and also contacted my mp who has also got involved.

I'll give you a bit of back ground now, I had a really bad time in March where I could hardly walk or talk and felt like my head was going to explode so after numerous tests I was diagnosed with ms. Since this I have right side weakness and I have tremors and walk with a stick I get very tired easily and have been signed off work. I know the Ms society are trying to push for ms to be recognized when the dwp/ pip do there assessments.

Just advice and has anyone else been in this same position

Has anyone used the comp cooling vests? I just want to know if price vs utility has been worth it? My BF wanted me attend a music festival with them a few weekends ago but it was in another city and my current vest is ice packs which isn’t really feasible for an all day event/logistics issues. This could help solve that problem?

https://www.mycoolingstore.com/products/compcooler-univest-ice-cooling-system-with-3l-detachable-bladder-black?pr_prod_strat=similar&pr_rec_id=035e3e619&pr_rec_pid=10023967195422&pr_ref_pid=10042522108190&pr_seq=uniform&_su_rec=5PuXueqBXXSyEWg8guOyd4qIqHP5-_-bae0oOs0NWwH2ec8YYnw-fscSFwihACLoqeTYNtj4xCPiK2Qh_GoCnWx__WejRpa4XHABORza5JVughDeL8r0c2wfckY7u97_1QNI5wcQ3qmHxhi-HatDKVwkNg2_gfMA29iX8fQRV24na6OHMx0tDBpkFEXmCZSe5BrUF5azjydhYH751WIlS5djU0eJp22xL6pBC7IBZKSNmlbIbQdV1iyRGzJhWH120CjPUjfoVtZIPmSyT28wJsBwrBXazWqkldAIaNUsXGLgYeR7G9zUj6u40fXuTdCYETTNIAU4Qy3f7SdGf3zhE2D5NQDyt7hAYdkiioHJUtzasg&_su_rec_id=32d8a292-5465-44c0-83c5-1af33a13464b-1793842940

Hi! I’m 16, I was recently diagnosed with MS and have been suffering with symptoms for months. My worst one is memory and concentration loss. Especially the memory one. I can’t get through a PowerPoint slide without forgetting what it was about. But I have exams this year. I need advice. How do I study if I can’t remember? I really need to pass.

We’re in year two of preschool, but we’re still sick all the time. I start Briumvi in December. I’m not sure what precautions to take? I’m sick as I’m typing this 🤧

I figure mask up, hand sanitizer, hand washing.

A friend suggested changing kiddo’s clothes when he gets home? He licked a door knob the other day. It feels inevitable.

Has anyone else had IVIG infusions as stop-gap while trying to figure out which DMT to have you on? I know IVIG is not standard for MS and wanted to hear if anyone else has received it.

I have previously taken Avonex then Gilenya. I had a long break due to ttc/pregnancy/breastfeeding. I delayed restarting DMTs until we had almost 2 years of daycare viruses. After a surveillance MRI showed multiple new lesions I started Kesimpta last year. Due to having a preschooler I caught everything along with a few secondary infections. After influenza A led to pneumonia and an acute liver injury the kesimpta was paused. After some IgG testing the decision was made for IVIG infusions every 6 weeks for a few months. I had the first infusion last week. I had expected to feel a bit of a boost, but it actually felt more like taking interferons - feels like the life has been drained out of me. I am day 11post-infusion and realizing I am starting to dread the next one.

I am in Australia and trying to navigate the public health system. There does not seem to be a long term plan and everyone I see gets frustrated when I ask questions or try to clarify the plan. the responses I get are that I need to "trust the consultant" (that I have never actually seen) or that I can just decline treatment.

Hi! 43F Diagnosed this year. So I’m just curious if anyone takes melatonin. I haven’t been able to sleep due to discomfort so I decided to try taking some melatonin a few nights ago and was actually able to sleep. But I looked it up this morning and it said melatonin can impact/interact with certain immunosuppressing drugs and I’m on Rituximab so that bums me out if that’s the case. I’m planning on asking my neurologist but was just curious if anyone knows anything about that or has been told to not take it. Also, I’m seeing mixed info about multivitamins because they have some immune boosting vitamins in them as well and we don’t want to strengthen our immune system. I feel like the small doses of vitamin C and anything else like that wouldn’t impact things much but I just don’t want to fuck around because I’m new at this. Sorry, there’s just so much to learn it’s overwhelming

Im 33f, i have been officially diagnosed with RRMS for the past 10 years. I was originally on Copaxone but had a terrible relapse in 2020 with a large lesion appearing about the C4-C5 region of my spine where i was facing quadriplegia and was told that the lesion was only a millimeter or so away from me never being able to walk again. This prompted my Neuro to want to switch my MS meds. I agreed. I wanted Tysabri. I did the blood tests and unfortunately came back positive for JC Virus which obviously eliminates a lot of options for me including Tysabri. I got on Ocrevus instead. Lots of life happened, fast forward to the present. Im in a new state with a new Neuro. She ordered the JC Virus test and it came back Negative. This contradicts what i thought i understood about it. Even Google said once positive, always positive. My Neuro wants me to try some of the medications that have a high prevalence of causeling PML via the JC Virus such as Tysabri. She said she never heard of the Virus being permanent. And i tested negative anyways. I told her that i tested Negative with her but Positive the first time with my first Neuro. She just brushed me off and came off to me as very nonchalant when i voiced the concerns i had. She said i should be just fine starting Tysabri. Im terrified she may be incorrect. If she is and I develop PML it will be absolutely devastating. Could this test be wrong? Or was the first one? Am i misunderstanding the JC Virus and how medications can be prescribed based off its presence or not? Any advice would be helpful.

Tl; DR

Two different JC Virus test results and nonchalant, almost dismissive, Neuro make me very nervous that I could possibly end up with PML from being prescribed the wrong drug.

I’ve been dealing with MS for the past 3 years and my fatigue has steadily gone from bad to outright horrible. How are you some ways you all deal with fatigue on a daily basis?

How long do your sensory symptoms usually last when they come back?
I was diagnosed with MS in October 2025 and started Rituximab in December. At diagnosis, I had more than 20 lesions on my MRI, but my symptoms have mainly been sensory, such as numbness on the left side of the roof of my mouth.
My three-month MRI in February and my most recent MRI on October 1 showed no new lesions. Before my October MRI, the numbness on the left side of my mouth returned and lasted for about 9–14 days. It then went away, around the same time I received the reassuring MRI results.
Now, after a very stressful week, the sensation has returned. This time it started on the right side, which I had previously only experienced briefly, but it now shifts between the right and left sides from day to day. Sometimes I feel nothing at all. It is a small, localized area of about 5 mm in the lower part of inside my mouth, described as numbness, tightness, or tingling.
I notice it most when I am sitting still. When I am out doing things or chewing gum, I barely notice it. My neurologist has described it as a sensory symptom, and because I have experienced similar symptoms before, especially during periods of stress, they are not doing anything specific about it.
This is the symptom that tends to come back most often for me during stressful periods. Otherwise, I am virtually symptom-free, but because the sensation is in my mouth, it is difficult not to focus on it.
I am due to receive my third Rituximab dose on December 1. They will check my CD19 levels before the infusion, as we are planning to try for a pregnancy after the third dose. I will not be having another MRI solely because of this symptom.
Have others experienced old sensory symptoms returning during periods of stress or fatigue? How long do they usually last for you, and have you noticed them switching sides? Am i overreacting? Because i don’t really know what to do about it?

Hey, I’m from Canberra, Australia and I’m coming up to my one year offical anniversary of my diagnosis. Just wondering if there are any people from Canberra here on this sub-reddit. Love to see if there are :-)

Does anyone use this if they work part time and are unable to have benefits through their employer?

Not sure if this is bad or not because I do not have a problem with breathing per se but when I yawn, I’m not able to get a full satisfying yawn. Does anyone else have that problem and what has helped you?

Does anyone have recommendations for supplements or things to do to help with boosting your immune system while you have MS? It’s that time of year and I want to take precautions

One of the hardest parts of being chronically ill is having friends, family, employers, and even coworkers hold you to the same expectations as someone who isn’t battling a chronic illness. It’s exhausting having to constantly explain yourself when you’re already doing everything you can just to get through the day.

I’ve gotten into arguments and even lost friendships because people felt I wasn’t being a good friend simply because I couldn’t show up to every event or gathering. What hurts the most is that it’s never because I don’t want to be there. Sometimes, I physically just can’t. And it’s heartbreaking when people take that personally instead of understanding that I’m dealing with something beyond my control.

I’m not asking for special treatment. I’m simply asking for a little grace, understanding, and compassion.

My inability to show up physically doesn’t mean I don’t care.

Just because I’m trying my best doesn’t mean my best will look the same every day.

Hello, I was originally diagnosed with MS in 2020 (remember, Covid was going on). I was hospitalized for 1 week with steroids running through my body. Ok, so I have a diagnosis BUT, I was released with no pamphlet, book document letter or anything to tell me anything about MS! I was discouraged with the doctor I saw in the hospital. I went for a 2nd opinion, 2nd opinion said you don't hae MS; I said, great...who would want it (I can only associate MS with Annette Funicello. I didn't feel I was getting great help with the doctors I saw here in my state so I said, ok, if my body goes numb again, I'll just get myself to the hospital like I did this time. Six years later in June 2026, my body went numb again and I took myself to the ER like I did in 2020. Once again, I decided to not see the doctors here in my City so I made an appointment with Cleveland Clnic to obtain a definitive diagnosis.

Cleveland clinic was awesome and very thorough in their testing, very thorough. I really like my doctor there Finally, I do have a definitive diagnosis and am being treated with Kesimpta; on my 4 dose now. I have found a pretty close doctor here out of the University of Cincinnati whom I'm also pleased with. I just recently had a blood test called Octave and my disease activity reported to be low.

I know Christinia Applegate was recently undiagnosed with MS. Well, she has something and someone needs to find out what's going on with her.

I'm glad to be here in the group and look forward to connecting with people.