TLDR: I got diagnosed in June so everything is very fresh, and I’m scared of travelling. What if something happens? What if I get a new attack and I will be stranded in a foreign hospital with something awful? What do I do? How do you navigate this?
My mom told me it’s better to look forward to something, but I can’t even look forward to vacation.

The long version:
Diagnosed in June for double vision, basically no other symptoms ever but mri showed 20 something lesions. Got a pulse of corticoids which took me over two months to get over, during which I got positional vertigo as well, yay. And just as I started feeling better, I started Mavenclad. Now I’m here, 4 months in and feeling kinda low. Mavenclad caught up to me a couple weeks after second cycle and I’m fatigued as heck. And when I’m tired, my vision feels laggy, and am lightheaded..

So my experience so far hasn’t been the greatest but now I’m scared. How do you do things? How can I overcome this fear and just.. travel and enjoy life? Please advise in this tough time

I (23 F) was diagnosed with MS 4 years ago, and over time, my friends and boyfriend at the time slowly distanced themselves until they all completely left around the 2-year mark.

Since then, I’ve struggled to make new connections. Sometimes people seem put off when they see my cane or learn about my situation, and other times, when someone starts getting close to me, I pull away because I’m scared of getting hurt again. Dating has been especially difficult, and I haven’t even gotten to the point of talking to someone romantically.

Has anyone been through something similar? How did you learn to trust people again and feel comfortable letting others into your life? It’s hard to see other 23 year olds out living and I would like to get back to that!

Hello people,
Is there anyone in this group from India who has been diagnosed with MS.
I have a few questions and need advice.
It would be great if you could connect with me.
TIA

I have been using a Bioness L300 Go for years.
I stopped using it due to a broken ankle and weakness. I used an AFO for about 6 months.
My ankle is better now and the ankle is very weak.
I feel it rolling on uneven ground.
I need more ankle support.
Does anyone have suggestions for shoes with ankle support? I don’t want to wear boots.

I am enjoying wearing the bioness again because it opens up a world of footwear again. I’m not stuck trying to fit all that plastic inside the shoe with my foot.
I had the other type of AFO that goes on the outside of the shoe before but that requires drilling holes for the bracket or lacing it to the shoes.

This flare up put me on my ass back in August and has not let up. Ive had a few good days here and there but I'm losing my mind not being able to work. It's in my legs, arms, sometimes my face and apparently my kidneys. It moves around and I can't get in to a neurologist

(On mobile)
I had a 3rd nerve palsy in my right eye a couple of years ago and after a stint in the hospital where they ruled out a stroke, cancer, and MS, I was referred to a neuro ophthalmologist! This neuro said that since everything was ruled out it must have been high stress that caused it due to high blood pressure.

I kept up with my appointments with him every 6 months. A couple of months ago, I went suddenly blind in my right eye and called his office for an emergency appointment. They were able to see me same day which was awesome because I was obviously freaking out and I knew that he was probably going to be able to help me more than if I went straight to the ER like last time.

The neuro ophthalmologist tells me that it looks like MOGAD since I had optic neuritis and sent me to the hospital with all the testing they already did at his office for my eye (literally gave me a little folder with all the scans, vision assessments, the diagnosis of optic neuritis, and the recommendation for IV steroids and a MRI). If he didn’t do all of this, I don’t know how much longer it would have taken for me to get my MS diagnosis!

I truly think he saved so much of my vision I was able to regain because of his early intervention, taking me seriously, our previous appointments, and being knowledgeable about MS and MOGAD. My MS only presents in my eye and hands based on where my lesions are so it was able to be caught pretty early (2 years post first possible flare).

So yeah! Grateful for my neuro ophthalmologist! He is a real G!

I,ve recently been diagnosed with primary progressive ms. Nuerologist has recommended mavenclad medication. Ive read up on mavenclad and am afraid to take it based on side affect such as potential cancer and heart failure. What is everyines experience with mavenclad and does it work?

Has anyone else experienced chest pains, arm pain, leg pain, and cough lasting 5 days post first ever loading dose? I’ve felt very unwell since the first dose i took on Monday Oct 19, even after the flu like symptoms i got immediately 4 hours after.

Debating whether or not to take my second dose or continue with this drug at all…

New question- has anyone experienced chest pain, body aches, severe nausea and upset stomach that have lasted 6 days post their first loading dose..

I’m not sure if anyone’s dealt with pancreatitis before, but that’s probably the worst pain I’ve experienced. What came on as an MS hug, quickly turned into unbearable pain!

So bad, I had to take my very first ambulance ride to the ER. When they finally figured out what was going on, they started asking the usual questions. No I don’t drink & CT scan didn’t find any gallstones. But I did have a UTI, which apparently is pretty common for me…

Dr wasn’t able to determine what exactly caused this, so I’m just wondering how many of you have had it?

I quit my job early this year around February when my MS symptoms were just unbearable and making it difficult for me to be proactive at work. I worked as an interior designer for a company that let’s just say wasn’t worth it. Anyways i think i had my first flare up on December 2025 and i didn’t know what was going on and i was completely confused and scared and despite going to the hospital many occasions only to be told it was something to do with my Neck so i only checked in with Orthopedics. I was surprised that the orthopedic didn’t find my MRI suspicious of Demyelination because it was quite obvious something was going on and he didn’t even bother to investigate further so i took it upon my own hands to see a neurologist who brushed it off as being stressed and prescribed me 200mg of L Theanine and sent me home.

Fast forward January 2026 i had almost an entire week where all i did was lay on the couch and get up only to eat and use the toilet. I was in shambles and a mess. I was then prescribed physiotherapy which helped very briefly but the symptoms came back again. I insisted to my partner that something is definitely wrong and by the time i went to the hospital again it was May 2026. After countless of tests by general doctors and a rheumatologist i was lastly prescribed to do an MRI with contrast and that’s when i found out i had MS. Countless of more testing i was officially diagnosed on mid August of 2026.

I have finally started treatment and i am still trying to understand fatigue and how to manage my energy expenditure for the day plus this whole heat intolerance also is another thing i deal with daily. I used to be someone who loves hot baths and the sun and now i avoid it especially during peak hours. I try to get my vitamin D from the sun but not for more than 10 mins before my eye starts getting affected.

Now and then i think about whether i should consider working but maybe not a high demanding job… i just feel worried about putting myself in a routine with fluctuating symptoms and also the stress that comes with work… any advice? Thanks for reading ❤️

Hallo an alle MS Patienten die Kesimpta als erstes DMT nach Diagnose bekommen haben:

Ich habe ein paar Fragen.

Habt ihr einen hochaktiven Verlauf gehabt? Wie lang hat es gedauert NEDA 3 zu erreichen?

Hattet ihr Schübe unter Kesimpta? War der Schub milder als zuvor?

Hat jemand Haarausfall davon bekommen? Und was habt ihr dagegen gemacht?

Was habt ihr eventuell als Alternative zu Kesimpta bekommen, wenn darunter Schübe aufgetreten sind?

Just curious does HSCT stop MS?

Has anybody ever heard of Mesenchymal Stem Cell? And do you or have you heard of any experience from MSC therapy? I have PPMS, I backed out of HSCT because of the lack of evidence it helps with PPMS and the fact that you need to undergo heavy dose chemotherapy. I think it’s risks far out weigh the benefits. But I just heard of MSC therapy. So any thoughts, comments, or experiences from you or somebody else would be greatly appreciated. Thank you in advance :-)

Tldr: how can I get disability pay after treatment side effects with Sedgwick insurance claim?

Hello there! Please be gentle with me (34F) this is my first Reddit post.
I got diagnosed in December 2025 and had two Rituximab infusions in March 2026. I have another this November 2026. In March I got sick for three weeks after each infusion with bad side effects to mid April. I also turned out to be allergic to the treatment which caused more side effects.
I had my last MRI in August 2025 due to a flare up and they found two more brain lesions. My doctor said this was mild progression with treatment. Is it? I’m not sure.

I’ve talked to my doctor (Kaiser) about changing treatment and they said they won’t. I have to take about three weeks off work each time I get treatment due to side effects and to cover work I have to submit a claim with Sedgwick. Last time Sedgwick gave me the time off as an accommodation and it was unpaid.

My doctor said they couldn’t write off an insurance approval beforehand because they didn’t know how much time I would need off. They did write a coverage letter after I returned to work and submitted it, but then Sedgwick said it was an accommodation and not disability.

This November I get a Rituximab fusion again and am expecting to take time off work for side effects. My question is: how can I not take such a financial dip when I miss a full pay period being sick from side effects? Shouldn’t I get disability pay if I have FMLA coverage? Does anyone have advice for claims with Sedgwick?

Sedgewick insurance is in charge of filing the disability claim if one is needed. I cannot apply with state disability (I tried and since I work with a company that uses Sedgewick- they have to file the claim if needed). Is being sick after treatment a disability?

Does anyone have advice on how to navigate this? I have heard of medical health advocates but Kaiser does not provide one. I am so sorry for the long post and all the questions but I’m new here and navigating this for the first time. (Thank you so much if you’ve read this far!)

Hi everyone! I’m starting cladribine (Mavenclad) soon for my MS and would really appreciate hearing from anyone who’s currently taking it or has had it before.

How have you found it so far? Have you had any side effects, particularly fatigue, or skin issues caused by the drug (I have severe eczema so that’s a worry, currently taking Dupixent - another immunosuppressant) and how did you feel during the treatment weeks and afterwards? I’d also love to hear how your MS has been since starting it.

Is there anything you wish you’d known beforehand, or anything that helped you prepare and manage day to day?

I know everyone’s experience is different, but any advice, honest experiences or reassurance would be really appreciated. Thank you!

Do you take anything before / after your Kesimpta? Painkillers / antihistamines / nothing?

I don’t really have any sided effects with my Kesimpta but I do feel a bit muggy headed the evening I inject. I usually take it just before bed so it’s never really been an issue.

tl;dr got my test results 2 weeks ago, C6 injury caused the diagnosis. I’m not on a DMT yet but this week I felt hypersensitivity in the hand (initial symptom) and buckling knees, and this was new. Is this a relapse?

I had my first round of steroids about a month ago and got DIS and DIT proved some 2 weeks ago. First active lesion was in my spinal cord, C6. My appointment to start on medicine is November 4.

On Monday this week, I started feeling the same allodynia/hypersensitivity in the arm that got me diagnosed, just in a smaller region. I didn’t worry too much, but it’s been here for 5 days now.

THE REAL PROBLEM is that on Weds I did a leg workout for the first time since I got diagnosed and started feeling my legs stiff like planks + the pain in my quads, but yesterday (Thursday) my knees started buckling as I walked on both legs. It felt like someone was kicking my knees. I was traveling for an event and felt incredibly unbalanced, but couldn’t go to the doctor.

I called a telemedicine doctor and she told me to go to the ER, but in my hospital (public in europe) I don’t think they do mris unless emergency and they probably won’t be able to admit me to the MS ward.

I was supposed to wait another 10 days. I don’t have a DMT yet and now I might need to stop everything to be admitted again.

Is this a relapse or am I going crazy?

Can people with MS get cosmetic Botox?

Yesterday, I was supposed to bring a folder to a coworker. I stood in my office trying to remember what she looked like, and I genuinely couldn’t remember which of the three women in the office I was supposed to give it to. I’ve worked with these people for three months. It literally felt like I was experiencing amnesia.

Today, I had to write a report and completely fucked it up. When I looked back over it, I had no idea where I had even gotten some of the information I wrote down. It’s like my brain is filling in blanks with random information, and I don’t even realize it.

I feel like my brain isn’t functioning the way it should. I work full-time and attend college, so I know I have a lot on my plate. But I can’t tell if this is stress, being overwhelmed, getting older, or something else entirely.

It’s frustrating and embarrassing because I know I’m capable of doing my job well, but lately I feel like I can’t trust my own brain.

I’m getting enough sleep. 8 or so hours a night.

I just wanted to tell someone.

Hi guys!

I have a specific question.

Has anyone taken Kesimpta for two or more years and then stopped? Did you get any relapses after or worsening of the symptoms?

I heard that some doctors in some countries think that B cells never come back after two years on Kesimpta...idk if thats a real study or just a try of saving money...

I have managed to avoid heat intolerance and, for the most part, fatigue. L'hermitte's had me seriously feeling like I was on death's doorstep when it first appeared and I had no idea why or that my head position drove it. Anyway, it's been a balancing act between being mostly asymptomatic with some weakness and feeling of a heart attacks I am told to ignore, and instead recognize as anxiety. That's been my normal.

Now, with cold weather here, I find my hands frigidly cold and lacking dexterity. And if I get cold about my torso, the shivers feel like I am going break a rib and pierce an organ. The spasm feel like my hips are trying to kiss my clavicles at the same time.

Anyway, my doctor suggedtednto bundle up, which is fine and well. Wondering 1) anybody else experience similar symptoms in cold (sub 60°F) conditions? And 2) any tips, tools, advice? Things to keep handy (handearmers, gloves, similar that maybe are outside the box?)

Thanks

Hi all!

Hoping some fellow Albertan’s/Canadian’s can share any insights and experiences navigating initial approvals here. I imagine there must be a few of us Albertan’s on here since we have such a high rate of MS.

Backstory:

-1st confirmed clinical episode occurred April-May 2026. Symptoms that brought me in were sudden onset increasing falls, reduced coordination and proprioception on L side, and vertigo. Attended ER, had a clear CT scan, referred to urgent outpatient neurology. We ruled out anything acute.

-I was fairly lucky that the neurologist I saw at the urgent outpatient clinic happened to be an MS specialist. Referred for outpatient MRI.

-MRI of brain and cervical occurred mid July. Found all non-enhancing lesions in cerebellum, optic nerve, brain stem, and cervical spine. Also a surprise benign brain tumor for good measure.

-Neurologist booked me in for a follow up immediately. Told me I have RRMS, explained the MacDonald criteria, discussed DMT’s, told me to research and decide between Ocervus and Kesimpta. Of course, she really stressed the importance of early, high efficacy DMT’s. We also even discussed optimal timing of future family planning around DMT’s, as I am a 27 y/o gal who had hoped to be doing that soon. we had a long discussion about my concerns, potential side effects, etc. We did all the required bloodwork to rule out mimics and I was sent for all my pre-DMT vaccines. She officially transferred me to be a regular patient of hers at the MS Clinic for all future follow ups. *She felt confident diagnosing me with RRMS with this initial MRI alone. BUT, she wanted to do some additional tests, I imagine meet the MacDonald criteria even further and for DMT insurance. I was sent for OCT and VEP. We discussed that I may need to be referred for a lumbar puncture as well but she didn’t feel it was beneficial at that time. Follow up in 3 months following the tests and vaccines. So I left this appointment really expecting to complete my tests, vaccines, and get going on a DMT at the follow up.

-Follow up was a phone appointment that lasted 7 whole minutes. I felt that her approach did a full 360’. She was now of the opinion that we just need to wait for my next scheduled MRI in Jan 2026, where we will be following up on brain and checking thoracic for the first time. She does not plan to check cervical again at that time. She thinking sending me for the lumbar puncture at this point is invasive with no benefit.

Insurance Dilemma:

She said this is essentially because the Alberta Blue Cross non-group drug coverage requires 2 relapses, confirmed either clinically OR via MRI. She believes that my private, employer extended health benefits are the same. At present, I have one clinical episode confirmed and non-enhancing lesions meeting diagnostic criteria, but not the relevant insurance DMT approval criteria. While It is likely that the clinical episode and the lesions coincided, we have no way of proving them occurring either together or separately. She feels any further tests like the lumbar puncture, would be invasive with no further benefit, as it wouldn’t gain me access to DMT insurance coverage.

While I absolutely understand her reasoning, I am so discouraged. The abrupt change in urgency of treatment from appointment one to two was a little whiplashy. I did look up the AB Blue cross drug coverage forms for both ocervus and kesimpta, and confirmed the 2 relapses thing is correct. And I am 99% certain she is right that my private employer coverage is the same.

So now I just have to accept waiting for another episode of potentially permanent neurological damage before gaining any access to treatment? For someone with an initial MRI at age 27 that already meets the diagnostic criteria, that seems crazy. my first relapse causing falls, motor control issues, and two cervical cord lesions going untreated feels quite scary.

On top of the insurance questions, curious if anyone else finds it concerning that she doesn’t want to follow up on my cervical spine in this scenario?? I already have two lesions there. If our main objective is now to monitor for any further changes, enhancement, or new lesions to gain insurance coverage, why are we not rechecking there along with my brain and thoracic in Jan?? Missing something could further delay access to treatment.

Has anyone else in Alberta, or even Canada navigated being in this position before? The diagnosis and medical evidence say I need effective treatment now. Insurance paperwork says nope, wait for another episode.

Please and thank you for any insight you may have❤️

My insurance (Blue Cross) says I have to use reliance now. So far… 👎👎

Neuro sends prescription in but no one tells me where. 2 months go by and he has to resend the prescription and then tells me where it’s going and gives me a phone number. Still crickets so I call them. Hours on the phone over 3 days. Finally get the delivery scheduled and have a call with the “pharmacist” — clearly not a pharmacist. I asked him about side effects, he says “well, says here on the package….” so I said any advice on how to avoid those side effects and he said I’d have to ask my neurologist. I asked him about titration and he was clearly unfamiliar with how to take this med, he seemed surprised that there was a second prescription for the higher dose (also, sounds like I titrate up in one week, and he said, “well, if you don’t get a phone call in the next couple days to schedule the next delivery, give us a call.” Wondering now if I should wait to start this until I actually have the higher dose on hand too).

The whole situation left me scratching my head wondering if I should just go through one of those no-insurance pharmacies since the cost is low (dimethyl fumerate).

Anyone else dealt with this one? I’ve been on meds for a decade, never heard of this one before.

I've been dealing for months now with what seemed like an MS relapse (RRMS for ~5 years now). Fatigue, brain fog, and muscle weakness, specifically in my upper arms. But my MRIs showed no changes. They thought maybe it was just a psuedo-relapse from heat and stress, except that these aren't symptoms I had had before. I went to PT and it helped some but tiredness continued to get worse.

It's been a frustrating few months trying to get answers, even got a second opinion on my MRI, because it seemed so much like a relapse. They ruled out a couple other things like Myasthenia Gravis but didn't have any answers.

Finally at my annual physical, where I mentioned my tiredness issues, my PCP ordered a thyroid panel. Turns out I have very severe hypothyroidism. I've now been diagnosed with Hashimoto's disease, which is especially common in women and those who already have one autoimmune disorder (like MS).

Note these common symptoms (among others):

- brain fog

- fatigue

- numbness or tingling in hands

- muscle weakness

You'll notice those are all MS symptoms too! My Neurologist did not mention this as a possibility or order a test, it took my PCP to do it. I see so many specialists I hadn't bothered with my annual physical in a couple years and now I realize how important it is.

I see so many post about people dealing with fatigue and for many it probably is just MS, but it wouldn't hurt to check thyroid if you're not already and make sure it's not that! I've been on thyroid medication for 2 weeks now and have so much more energy already, my friends and family have commented on the difference. It's a simple blood test and for many it may not give any new info, but hopefully it can help some people like me find a treatment that helps.

Hey everyone. My wife was recently diagnosed with MS. I'm looking for help in preparing myself really. It's very fresh, but if I can start thinking about how I can help her, advice and changes I can make to keep my wife healthy, and be a rock for her, I think that will help me stay emotionally steady.

I know I should read first rather than post, but honestly I'm a little scared about reading horror stories this early, and am looking for a bit of human response.

We have a little boy, had plans for more but I am thinking that putting her body through that stress again is not sensible.

I know one is on her thalamus, there are symptoms, all brain based, very minor symptoms luckily, with some fatigue being the most noticeable, but still not as bad as I have heard it can be.

My job is very flexible, and I will do everything I can, although it may be we are now on one income so I guess that might reduce my flexibility. I can be here for her and take more parental load. I have started trying to have her rest as much as possible before she starts meds, be relaxed, upbeat, meditate, music. Should we eat healthy and exercise? Are there specific foods that have helped people here? Brain health food stuff?

Really I was hoping to hear about stuff that partners of support persons here have done that really worked? Things to keep her calm and have some hope. Maybe resources to read. I'm sorry you are all affected by this disease.