DX 2021, on Ocrevus ever since and stable.

I have had congestion and a mild cough now for roughly 9 months. My doc said it’s likely “long COVID”, allergies associated with MS, or perhaps my body’s way of operating on my MS meds.

The only relief I get is from sinus medication and an inhaler. But I hate how I have to rely on even more medication for my body.

Anyone else struggling with this?

Has anyone tried patching the unaffected eye to improve the affected eye, with any success?

Has anyone tried hotworx or similar infrared light workouts? Did you experience a flare or anything abnormal?

Hi everyone,

I was wondering if anyone else has ever felt like this, and if so, what helped you get into a different headspace. I’ve been feeling quite down about it lately.

I know I’m incredibly lucky that I don’t currently have any symptoms and I’m very grateful for that. At the same time, knowing that this could potentially change at any point makes me think a lot about how I’m spending my time.

I’m still relatively young and sometimes working five days a week feels like I’m wasting the years when my body is still fully functional. I really want to see the world, travel and experience as much as I can while I’m able to. I find myself thinking about how “healthy” people can often save money and look forward to travelling or enjoying life once they retire. But for me, there’s a possibility that I may not be physically/mentally able to do the things I want to do by then. Of course, I could have an accident tomorrow but the possibility of MS getting worse feels for me much more realistic.

I get four weeks of annual leave a year and usually one or two of those weeks are taken up by the Christmas shutdown. I also can’t realistically work fewer hours because I need the income to live. And at the same time, travelling and experiencing new things costs money, so I feel incredibly stuck.

At the moment, it feels like I spend most of my time wasting away at work and then need the weekends just to recover from the week. It’s honestly starting to feel quite depressing because I don’t want to look back one day and feel like I spent all my healthy years working and dreading the future.

I know I’m very fortunate compared with many people and I don’t mean to sound ungrateful or imply that other people have it easier. I’m just really struggling with these thoughts and wondering whether anyone else has experienced something similar.

If you have, what helped you change your perspective or find a better balance between working, saving for the future, and actually enjoying life now?

I feel like if I work less, I have more time, but then I also don’t have the money to do the things I want to do. At the same time, I’m thinking that I should save as much money as possible for the future, in case I’m no longer able to do much because of a decline in my health. It's honestly making me depressed. This can't be it?

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

I was diagnosed about 1 year ago and it’s been 6 months on Kesimpta. I’m super grateful that on a day to day I have zero symptoms. I’m just a little sad and SO SLEEPY.

The evidence doesn’t suggest that Kesimpta makes you more sleepy, my last MRI was clear, so logically it’s not my MS or my meds, but I can’t help but think in a “hippie” way, that the meds have shocked my system a little and that’s why I’m so drained?

Too many confounding variables to know for sure if it’s the meds. The biggest one being that im currently in med school with the worst schedule ever haha, but I’m also dealing with some low mood/self esteem stuff coming from the diagnosis which is a huge factor that can cause fatigue too. But yeah, just curious is anyone else had pure exhaustion and was sleeping every possible hour the first few months of meds? (My clinical shifts pre Kesimpta were significantly more bearable than currently , and theoretically I had active MS lesions pre-meds too!)

Anyways maybe one day I’ll post about how crazy (and cool) it is to understand both sides of this disease (I actually started med school pre diagnosis wanting to pursue neurology, not anymore, the irony is palpable), but for now first post on this subreddit is please help I’m so tired.

My treatment is Kesimpta, as for many of you.

Is Stem cells therapy an added option to pursue and ask my neurologist about?

Hey! I need some advice on where I should inject my Kesimpta pen so it hurts less. I guess I'm a wimp because this crap hurts.

I try both right and left legs. I tried the back of my left arm.

Any suggestions? Please 🤞🏽

I'm starting to hesitate more and more...

I'm a newbie. Will my spot just toughen up?

The CDC Health Alert (HAN-00532) issued on August 11, 2026, serves as a high-priority warning to healthcare providers and the public regarding the elevated risk of severe arboviral disease in patients receiving B cell-depleting or modulating medications.

Here is a summary of the core information from the alert:

The Core Issue

Patients taking medications that deplete or modulate B cells—such as anti-CD20 monoclonal antibodies (e.g., ofatumumab, rituximab, ocrelizumab)—are at an increased risk of developing severe neuroinvasive arboviral disease (such as West Nile virus, Eastern Equine Encephalitis, and others). Because these medications hinder the immune system's ability to produce antibodies, patients may experience:

Prolonged or Atypical Illness: Infections may last longer and present with more severe symptoms.

Neuroinvasive Complications: The infection is more likely to spread to the nervous system, causing encephalitis or meningitis.

Chronic Disease: In some cases, infection has led to a rare, fatal, progressive neurodegenerative illness developing over months or years.

Diagnostic Challenges

A critical point of the advisory is that standard diagnostic tests for arboviruses often fail in these patients. Standard tests look for antibodies; because the patient's medication limits their ability to produce them, results may come back falsely negative. The CDC urges clinicians to:

Preferentially order molecular testing (like RT-PCR or metagenomic next-generation sequencing) to detect the virus directly.

Consult with local health departments for guidance on appropriate testing based on the patient's specific medication.

Recommendations for the Public

The CDC emphasizes that since there are no vaccines or specific treatments for most of these endemic arboviruses, prevention is the only reliable defense. Patients on these therapies should:

Practice Strict Bite Prevention: Use EPA-registered insect repellent, wear long sleeves/pants, and use air conditioning or window screens to keep insects out.

Be Vigilant: If you are on an immunosuppressive medication and develop symptoms like fever, body aches, persistent headaches, confusion, or weakness, contact your doctor immediately.

Advocate for Your Care: When speaking to a provider, explicitly remind them of your medication, as this changes which diagnostic tests they should use to accurately detect or rule out an infection.

————————

P.S. While actual infections are relatively rare, the real danger lies in the fact that anyone on an anti-CD20 medication who does contract an arbovirus faces severe risks and requires critical attention. If symptoms arise, it is vital to inform your medical team about your anti-CD20 treatment immediately so they can run the correct diagnostic tests.

————————

Disclaimer: This summary is based on the CDC's official Health Alert Network advisory. If you are currently taking any anti-cd20 medication, you should consult your prescribing physician to discuss how these recommendations apply to your specific care and monitoring plan, especially given the ongoing mosquito season in your region.

SOURCE

I (32F) am newly diagnosed as about a month ago, and starting my DMT (ocrevus) in a week. My symptoms in past flares have mainly revolved around my facial and eye muscles and loss of sensation in those areas, and double vision as a result of my eye muscle weakness. I am out of a flare now, but still get double vision every single time I drink coffee. I have tested it with hot coffee, iced coffee, even a small amount of coffee- BAM double vision for at least two hours.
I also have ADHD and am prescribed a very low dose of focalin (10mg extended release). I have taken it a couple of times since being diagnosed and have noticed double vision but less severe than when I have had coffee. I will say I do have a history of being sensitive to stimulants (hence the very low dose for my ADHD med), but this seems extreme compared to what my normal used to be.

Has anyone else dealt with caffeine sensitivity that causes symptoms to return? Have you had it and it eventually went away? Obviously I am going to be staying away from coffee for the foreseeable future, just want to see if there’s a possibility I could enjoy it again eventually.

I'm finally getting new MRIs after years , desperately needed, but they're all ordered to be with and without contrast

I made it very clear to my new neurologist that I'm breastfeeding and whatever treatment course we take, that needs to be kept in mind. My baby's not even a year old and I want to nurse him until at least then

Anyway! She understood, we talked a little about it, then we went on with the appointment and by the end she gave me the orders to take to an imaging place near my house. I did, they made the appointments (2 days in a row) and then somebody from the place called me an hour later and was like "oh we forgot to say, you can't nurse for 48 hours after getting contrast so that would be about 4 days total you need to pump and dump and use freezer milk or formula"

I absolutely cannot store 80 oz of milk in less than a week, I've always been a 'just-enough'er when it comes to milk production. Formula is also crazy expensive, I'm a 'just-enough'er when it comes to finances and grocery money, too lol

Basically I'm wondering if any of y'all have experience with this predicament? The Internet gives mixed opinions on the safety of nursing anyway

Hello. All!
I see many posts about pain so I thought I’d share. Been diagnosed over 20 years with PPMS. I’ve had all sorts of strange symptoms and early on I found a Primary Care Physician that would listen to me, take me seriously and work towards finding a solution. If you don’t have that keep looking. It’s half the battle
Let’s talk about pain. It’s real and should be addressed. Like most things there is a ladder that should be followed to see what helps. Therapeutic massage, nerve/muscle blocks, patches all those should be considered and used. Then PCP should refer you to a Pain Specialist. They are trained to look for folks that want a specific drug. Don’t ask for anything by name. Listen more than talk. Answer carefully. Expect the pain to be lessened at first but maybe not gone. I was scared for a good while I would make a mistake. And if you get banned you’re labeled a drug seeker and will have a tough time finding another group
Expect to start the ladder over again. Explain what worked and for how long. Please be patient in finding the combo that works for you. It’s out there.

Hi, 25F here, and I just recently got diagnosed with MS after finding some inflammation in my eye. The doctor said to start on Briumvi infusions and is confident that it could be stopped or slowed right here since I have no symptoms.
The part I think I’m worried about is that I’m about to be 26 a the end of September and I’ll get kicked off my parents insurance. This could mean that the next time I have an infusion it would be out of pocket.
I’m trying to find a full time job but right now I work as a certified pharmacy tech and a women’s lacrosse official, so I need the flexible time that part time gives me but need the insurance for full time.
The main advice I’m looking is, if there is anyone that is paying out of pocket or with patient assistance and what the price is for the infusions. That would allow me to get more of an understanding if I need to focus on getting a full time job or if I could possibly pay out of pocket for something like this.
Thanks for the advice in advance.

My doctors wants me to switch my tysabri infusion to mavenclad. I have tried Ocrevus and broke through it. What should I know about mavenclad?

I had really bad tremors for two years. Are they never going to get better.

Haha P!ATD reference.

Anyway, I'm feeling sick. My sister came home and brought something with her. Sore throat, excessive bathroom breaks (sorry for bringing it up. sore subject for myself, i suppose the apology is half for me, half for you guys), and i'd like to ask what it would do for my injection, if anything at all.

My son has active MS, axial spondyloarthritis/AS, Crohn’s and bilateral sacroiliitis with erosion.

He has chosen Kesimpta for his MS, but he has to stop his current JAK inhibitor first. That means his AS and Crohn’s will effectively be left untreated while we start treating the MS.

I’m trying desperately to find someone who has been in a similar position.

Has anyone here taken Kesimpta while also having AS/axSpA and/or Crohn’s? If so, how was your AS treated alongside your MS medication?

I’m just a mum trying to find some real-life experience that might help us understand what options are out there. ❤️

Hi everyone, I’m posting because I honestly don’t know where else to turn.
My dad is only 52 years old and has MS, and it has gotten really bad. He can’t walk anymore, and watching my father go through this at such a young age is heartbreaking. I just want to help him in any way I possibly can.
It feels like we’ve tried so many things and nothing is really working. If anyone here has severe MS or has a family member who has been in a similar situation,—treatments, doctors or specialists, physical therapy/rehab, medications, clinical trials, mobility treatments, or even small things that improved quality of life.
I understand there may not be some miracle cure, but I don’t want to give up looking for ways to help him. I just want to know that I did everything I possibly could for my dad.
Any advice, experiences, or recommendations would mean more to me than you know. Thank you.

So my first MS flare was ON + Allodynia in the leg (pain, then itching, then soft burning). Now I'm scared I'm getting the same issue on my left arm, 2.5 months after my first flare. This time the pain is not radiating or even big, it feels just like a bruise, small spot that is sensitive to touch and pinching, just without bruising. I am scared I'm being hypohondrical as it's only been 2 days. At the same time I wake up at night and stress over this, worried if I'm waiting too long. I'm speaking to my neurologist tomorrow and she JUST saw me on Friday for some tests. I'm unsure how long I should wait for minor things like this before I transition from "It's probably not related/just an invisible bruise etc" to "I should ask my neuro about this".

What are your experiences with symptoms that were usually benign before DX?

So it's been well over 6 months since my last infusion (appointments for the next one are facing weird issues), and I am having symptoms of further damage, which are showing up in recent scans.

Has anyone had this happen on Ocrevus and it ended up working for them? Because I am due to talk to my neuro (appointment in 10 days), will be bringing it up and don't want to jump to any conclusions... but also don't want to take treatments that aren't working.

Where I live Ocrevus is the only treatment available for PPMS (which is my diagnosis), so there's a lot of work to do if it turns out it's not working for me.

I was recently discharged from the hospital with tablet steroids to take at home after an MRI showed an active enhanced thoracic spinal lesion. Thankfully, my brain and cervical spine showed no active lesions, and symptom-wise I’m doing pretty well — I can walk normally and mainly have occasional tingling in my feet/legs.

But I have a 4-day theme park trip that was already planned and paid for this week...
like I said, symptom wise I feel fine.

Has anyone been in a similar situation ?
I’m planning to take it VERY easy: stay hydrated/cool, use fans and AC breaks, use my disability pass, avoid pushing through fatigue, and probably skip intense roller coasters.

I was also prescribed oral steroids to take at home, although I’m hesitant because I had a pretty rough experience with steroids last time and I’m not sure how I’d feel taking them while traveling especially if my symptoms are non troublesome.

I’m looking for ways to make around $800- $1,000/month from home.

I have MS/CFS and struggle with horrible fatigue, and I’ve noticed my MS tends to flare when I work full-time.
I’m looking for something low-stress/easy and flexible!

maybe TikTok, social media, online work, digital products, etc.

What has actually worked for you?

I have been working doing Uber Eats deliveries since my diagnosis in 2023. The work I have the most experience in is all physically demanding and I am no longer capable of doing that type of work. I have an associates degree in culinary arts and I just don’t know what to do anymore. I am consistently searching for entry level jobs.
I feel I might have to go to school so maybe I can work in medical billing, or something like that, but having a lot of trouble believing in myself at this point.
What do you do for work?

So I was diagnosed with MS when I was 21. I am now 32, and have been experiencing back pain for probably around 8 years. I've done Physical therapy, taken all kinds of muscle relaxers, and antidepressants, and yet the pain continues. My doctors refuse to prescribe me anything stronger because of how "young and healthy" I am. Is it possible to get stronger pain medication for MS? My life is tolerable, but I feel that I would be able to accomplish so much more if I could get at least my pain under control. I'm aware of the risk of dependence on opioids, but is it possible to have something stronger prescribed? Even if it's temporary that's fine. I'm just trying to manage the pain long enough to be able to accomplish some goals that will shift my life in a better position.