r/MultipleSclerosis

Mods: I hope it's ok if I post this here, it is a hot topic in the US. It's sort of MS/treatment relevant.

I just need to get this out of my head and maybe calm down a bit. I get my next Ocrevus infusion mid-October, so the latest I can get the flu and covid vaccines for the coming season is mid-September. Here we are getting to the end of August and I've heard nothing about whether or not there will be vaccines for these this season much less when they would be available here in the US. I check the CDC and FDA websites every couple days and have seen nothing since May about generally available vaccines. I did see news that the FDA approved an mRNA flu vaccine a few weeks ago, but only for people 50+yo. No indication of when it would be available. I'm kind of freaking out since I'm on Ocrevus and I'll get more vulnerable than I am now come October. Without a vaccine for me or potentially anyone else, I'll be masking up pretty much all the time like back in 2020 and 2021 before the covid vaccines hit. So yeah, I'm scared.

Good evening. Hope all are feeling okay. So I’m experiencing on my leg and arm in one spot on each where it feels like a bug crawling on me. But of course nothing is there? Is this something you have ever experienced

Anyone want to brief me about what usually goes on at the patient intake for ms physical therapy?

bonus if you had an encouraging improvement lol 🖤🖤🖤

Hey yall. 27 M in Tennessee looking for a second opinion for my new TMS diagnosis. Has anyone ventured down to Mayo Clinic in Jacksonville? Was it worth it?

i saw a tiktok basically saying that if you have a chronic illness, you shouldn’t be expected to work, and honestly i disagree with that pretty heavily.
obviously, ms affects everyone differently. some people genuinely cannot work, and there absolutely should be accommodations, disability support, flexible working arrangements, etc. i would never judge someone for being unable to work because of their illness.
but i also don’t agree with the idea that having a chronic illness automatically means you shouldn’t work.
for some of us, working is actually important to our quality of life. it gives us structure, independence, financial security, social interaction, a sense of purpose, and something that exists outside of our illness. i don’t want my entire life to revolve around being sick.
i have ms, and i want to work. i want a career. i really want to be a teacher. i want my own money. i want a routine and coworkers and something to focus on besides my health. and i don’t think wanting that means i’m somehow ignoring my illness or pushing myself beyond my limits.
what makes this especially complicated for me is that i haven’t disclosed my diagnosis to my current employer, and i don’t plan to. when i was going through the process of getting diagnosed, i told my previous employer what was happening, and i ended up getting fired. now that i actually have a diagnosis, i genuinely don’t know how i’m supposed to feel about disclosing it at work again.
part of me feels like i shouldn’t have to disclose something so personal just to be taken seriously as an employee. another part of me wonders whether there will eventually be a situation where disclosing it would actually benefit me, especially if i need accommodations.
i think that’s why the whole “people with chronic illnesses shouldn’t work” conversation bothers me. i don’t want ms to decide whether i’m allowed to have a career. at the same time, i don’t think people should have to hide their illnesses because they’re afraid their employer will see them as less capable.
i think the conversation should be less about “should chronically ill people work?” and more about “how do we make work sustainable and accessible for people with chronic illnesses?”

anyway all that aside. do i disclose this to my school or not….?

edit: im on dmt (rituximab) and i work with middle schoolers and high schoolers which is technically better than primary when it comes to how often they get sick.

I just started my first semester of an MSW program this week, and I’m having a hell of a time figuring out how to make my weekly schedule actually work rather than just look mathematically possible on paper.

Right now I have:

- 5 graduate classes — 4 online/asynchronous and 1 in-person class every Wednesday from 1–4 PM

- 14 hours/week of practicum

- QMHP work — currently one client who is allotted up to 12 hours/week (although I don't need to use all 12 each week)

- A contested divorce. I finally have an attorney, so hopefully a lot of that mental load should decrease, but I still have documents to find/organize and occasional divorce-related tasks and appointments

- MS, POTS, and fibromyalgia, which means my body occasionally looks at the schedule I carefully created and says, “That’s adorable"

- And then, theoretically, I’m also supposed to keep my house from becoming a biohazard, feed myself, shower with some degree of regularity, do laundry, take care of my dog and cat, sleep, and perhaps experience one recreational emotion per fiscal quarter

The biggest problem I'm running into is that I can create a schedule where everything technically fits, but it requires basically every functional hour of every day to be productive. There’s no room for a bad symptom day, fatigue, appointments, something taking longer than expected, or just being a human being who occasionally needs to stare blankly at a wall.

Unfortunately, I also don't have an obvious thing I can simply drop right now. I need to stay enrolled in school, practicum is required for the program, I need to maintain at least some work hours because everything is so expensive, the divorce obviously isn't optional, and neglecting myself/the animals/the house indefinitely seems frowned upon.

For people who have balanced some combination of grad school + field placement + work + chronic illness/disability + normal adult responsibilities, how did you structure your week?

Did you:

- Batch practicum/work into longer days?

- Spread everything across shorter days?

- Designate certain days specifically for schoolwork?

- Protect one completely obligation-free day?

- Build “buffer” blocks into your schedule?

- Work below your theoretical maximum hours so you had capacity for bad health days?

- Have different versions of your schedule for good/average/bad symptom weeks?

- Outsource or dramatically lower your standards for household stuff?

I'm especially interested in actual weekly structures that worked for people, rather than productivity advice like “wake up earlier” or “use a planner.” I own planners. I have made spreadsheets. I have color-coded things. The problem is unfortunately that there continue to be only 24 hours in a day and those with chronic illnesses know that we definitely don't have the same 24 hours as a healthy functioning person.

I'm trying to figure out what a sustainable version of this semester looks like before I accidentally create a schedule that works beautifully for 10 days and then sends me directly into the sun.

Any advice, sample schedules, things you wish you'd done differently, or permission to lower my standards somewhere would be greatly appreciated!

Hi all. Im male and 56 years old. I was diagnosed with RRMS back in 2004 after bouts of optic neuritis. MRI scans showed some lesions on my brain, but none present on my spinal cord. Reviews with my neurological consultant and several further MRI's show no new lesions since the first in 2004. Im very fortunate in that I can road cycle 100 miles and have maintained a high level of fitness. My frustration is with short term memory which can be pretty scatty, whilst I have great long term memory. I have had to request interview adjustments in my day job when sitting promotion boards because the brain fog and facts recall are very affected. Ive read that RRMS will eventually become secondary progressive. Im not sure if I am still at the RRMS phase, or whether any progression has occurred, what are the indicators that this has taken place? Thanks for any replies and I wish the very best for you all.

My vision has been very blurry - mostly noticeable when I try to read. I’m having a hard time figuring out if it’s a true relapse, a relapse coming, or just pseudo flares.

I’m 13wks pregnant - so still in first trimester when relapses are still possible. I know still possible in 2nd & 3rd but the chance typically goes down significantly, so I hear.

I’m trying to figure out if I ride it out or if I truly need to alert this to my neuro. I should note that this isn’t this first day either with vision out of focus - it’s been pretty consistent but today is very noticeably different. Yes I have been stressed, not sleeping as much, not hydrating as well as I should and not eating as well I should (pregnancy 🫠) — which makes it easier for me to write off as I’ve pissed off my symptoms and it’s on me, no need to panic myself, family & doctor about a relapse…

Could really use some advice 🙏

Update** I left a VM w/ my neuro so he is informed. No I don’t have an eye doctor but thanks to yalls advice, I’m now looking into it. Also the eye exercises is much appreciated advice - didn’t really know that was even something. I appreciate all of you 🙏

All of a sudden I'm not getting a renewal call from my Kesimpta. I finally get ahold of the pharmacy I'd been using (forced to use) and they say another company I've never heard of, Valero, never got the refill request.

Check the doctors office and they don't have the new insurance on file. Even though they've been my supplier for 7 months.... I can only pick my old pharmacy for a refill.

I call the doctor's office and let them know, they said they'd send it to Valero. Just now I get an email from Walgreens, owner of my specialty pharmacy, that it was rejected because of insurance. Yes, because insurance has to go through Walgreen's specialty pharmacy and not the local store.

All after 7 months of no problems with the new system. I think I'll send one final note to my neurologist saying "Figure it out." and be done with it.

And they were able to do more/further?

Im doing sit to stand and i’m very shaky. I assume it’s fatigue but i want to carry on.

Over this last year I’ve been working alot more but I am starting to feel the toil on my body. I think it’s partly due to the heat in these hotter months. I’m considering a WFH job. Anyone have some advice on how to find legit ones ?

I recently got a new MRI scan done and it said I have a loss of brain volume of the corpus callosum. That at first is not really too dramatic, from what I’ve read it’s something that can occur with MS. What concerns me is just that they can already see it after only 2 years since my diagnosis. I’ve been on Kesimpta the last 2 years and experienced extreme fatigue, depression, spasms and cognitive issues like concentration and anomia (word finding difficulties) on it, all while having no new active lesions. Especially since my spasms and cognitive issues got a lot worse I’ve been already put on new medication which is more „effective“ than Kesimpta. I’m only 22 years old so I’m genuinely terrified of the thought of my brain loosing volume, does someone know what this may mean for my future MS progression ? Or did anybody experience similar things?

I don’t want to be apart of this club anymore. I grieve constantly. I grieve my health. My old life. Not getting to raise my kids full time. Having to send my kids to my ex’s and their new significant other’s after they left me. Not getting to have more kids. I never wanted this. I just want to get to be with my kids. I wanted to get to raise my kids. I lost my job because i couldn’t do it safely with muscle control issues so I lost my main way to provide for myself. My parents are moving in with me because I can no longer do it all on my own. I love them but I grieve my independence and the life I thought I’d have. I’ve lost so many people because I don’t have the energy to maintain relationships and I’m struggling so hard with depression and anxiety all the time. I mask so hard all the time just to be able to pretend to function because I have kids to raise and responsibilities but I’m struggling so bad today. It’s stolen so much from me. I’ve spent so much money trying to get better, money that I don’t have. I feel like such a burden to those around me. I’m feeling so defeated today. Giving myself a few minutes to cry today then I need to get up and go get what I need to get done today. I’m taking the meds, I’m doing the therapy, I’m doing everything I’m supposed to but I just needed to share it with someone that gets it today.

My wife was finally diagnosed, and IMO it took way too long but that's another topic. We have meetings with neuro + other doctors now as follow ups and i want to make sure we ask good questions. I would love input from the community here!

Sorry about some of the numbering, i removed questions with personally identifiable info. Again my ask here is just to know which questions we should ask my wife's team. I want to make sure I don't miss anything critical.

1. INO recovery -> steroids required?
2. Data says strong DMTs asap. Thoughts? This and BTK inhibitors for smouldering?
3. Similar things like NMOSD rules out due to the blood tests?
4. Family panning - 2 more kids
5. Monitoring plan -> MRI frequency?
6. Drug testing protocol + risks
7. Cognitive baseline testing, worth doing?
8. Other factors - diet, exersize?
9. What things to avoid 100%? Wife does not smoke

And then my other questions for you guys:

1. What are other things we should be doing in parallel to support my wife?
2. What are low risk but potentially helpful things to try?
3. Is it worth paying to get second/third opinions from MS specialized neuros?
4. I'm ok spending ~$100k - $200k a year on whatever is needed for her. What should we FOR SURE spend on with that in mind? What are the no brainers? I want to go all out because even a slight improvement in quality of life is worth it for her.

Hi Everyone,

I am getting married soon and my Mom is having a really hard time finding shoes that she is comfortable in. She can’t wear heels at all with her MS, so she is looking at flats. She has tried a few of the Naturalizer ballet flats but they aren’t comfortable for her.

Does anyone have recommendations for brands that are sort of a hybrid of support/comfort but also will make her feel more put together in a dress? I know she is feeling really insecure about this and want to help her find something that works :(

Thank you!

What did you do?

I am doing standing on one leg while cleaning my teeth twice a day for a week - too early to expect visible changes?

What did you do and how did it help your walking?

Go a gym too

I've been diagnosed with this disease for 10 years.

I have multiple sets of images. I have blood work going back a decade. I've been on half a dozen DMTs.

I know what works and what doesn't.

Why do I owe my new provider $250 to refuse to restart my medication after moving to a new state and starting a new job because I don't have current MRIs?

All he did was the exact same tests I've done with every other provider. Nothing new was learned. No treatment or care was provided.

Follow my finger, tell me when you feel the vibrating stop...

And now I owe him $250 so he can refuse to start my DMT until I shell out another $1300 for updated MRIs plus whatever the lab panel costs.

This country is a god damned scam. Doctors are crooks. Hospitals are crooks. Insurers are crooks.

Ironically even though they are the most demonized, the party that I'm least upset with is the pharmaceutical company because their medicine actually makes me feel better.

If the damn doctor would just start the medicine that I've been on for years my deductible and OOPM would be blown away and I could get all the stupid imaging he wants.

Sorry for this hatepost but I don't know where else to rant.

People pleasing will be the death of me

I was diagnosed is 2022 with MS and shortly after, we moved across the country to a state that has a pretty temperate climate. We live in a bigger popular city and there are many sights to see, the coast, waterfalls, hikes, etc. This, naturally, makes a lot of our family and friends want to visit and of course enjoy what our new state has to offer.
A little back story: I had my second baby earlier this year. My main focus has been on rest and not getting a flare up. My husband took three months off for paternity leave but is now back at work and I have the two littles at home with me. My husband works about 10 hours a day 5-6 days a week. I have a job where I can make my own hours and give me a lot of flexibility. I am not paid for the hours I don’t put in but it’s something I can do to make a little money on my own and not go stir crazy being a mom 24/7.
Well of course people want to come and see the new baby BUT they also want to be entertained. It was barely tolerable when my husband was on paternity leave, bringing the newborn to fancy restaurants, “easy” paved trails, large parks, etc. I felt like the entire leave we were just hosting people, tending to THEIR wants, with little to no regard on their side as to how this could be difficult for us with a newborn. No one actually offered to help, to feed the baby, to take care of a dinner. And so there we were running around week after week saying “well they only come once a year” or “well it’s my mom and she wants to be able to see her new grandchild.” I put my foot down at the end of his leave with one guest trying to squeeze in a visit right before my husband went back and said it’s too much. With him back at work it all falls on me and I severely need to grow more of a backbone and tell these people no it is not a good time.
We’ve had two visits since my husband’s been back at work. The first was another visit from my MIL who is incapable of doing anything for herself and wants to be entertained the entire time. It was like driving another kid around to the splash pad, zoo, amusement park (with a 4 month old), etc. My husband told her to schedule a flight during the weekend so that he could help on those days and she schedules it Sunday afternoon to Friday morning. She’s ridiculously picky on what food she eats with her mild eating disorder and I was so physically and mentally drained by the end of the week. Mind you, whenever we have these visits, I have no time for my business, which everyone just expects me to drop and doing nothing with while they are there. And guess what? I let them!
This last visit has physically brought me at my breaking point. It was with a friend whose main concern was “getting good pictures”. She also doesn’t have children or an autoimmune disease so I know she doesn’t really get it. We hosted her, took her to nice restaurants, a full day at the coast (which is 1.5 hour drive one way), farmers market, cafes, hikes, and by the end of day 3, by body had enough. I was throwing up, body aches and chills, my feet and legs buzzing. My throat is sore and I can barely speak. I saw her for maybe 30 seconds on the last day before her flight left. I felt so incredibly guilty for letting my friend down because I was sick. She ended up going of on her own the last day to a few touristy spots and enjoyed herself but I could tell she was disappointed.

But I am also so tired not having a back bone and pushing myself to the edge to give everyone else the best time while I’m suffering, trying to care for my new baby (who frankly isn’t the easiest though I love so so much) and my other child who is about to start kindergarten, getting what work I can do in between the visits, keeping my house clean and comfortable for guests, etc.
The cherry on top is before this visit, my business was going pretty well and I received an opportunity from my company to be featured in a big campaign that’s happening this week. They only chose a select few for this and it would’ve really helped my business. But now I have to turn the opportunity down last minute because I’m still sick and barely able to talk 2 days later.

My MIL just sent my husband and I text messages saying she wants to visit again in a month and when we don’t respond within 5 minutes we get another guilt trip text message so I responded saying she could come but it needed to be through a weekend. Man, they say it takes a village but my “village” only exhausts me and puts me in a worse state.

All and any good advice is appreciated.
Thank you!

Hello Reddit!

I'm Dr. Eoin Flanagan, a neurologist at Mayo Clinic in Rochester, Minnesota, where I specialize in caring for people with multiple sclerosis (MS) and other autoimmune neurological disorders. My work focuses on helping patients navigate complex diagnoses and treatment decisions while advancing research to improve care and outcomes.

On August 24 at 11:00 a.m. CT, I'll be here live to answer your questions about MS and related conditions.

You are welcome to ask about:
• MS diagnosis and symptoms
• Treatment options and emerging therapies
• Disease progression and monitoring
• Living well with MS
• Current research and what's on the horizon
• Related autoimmune neurological conditions, including NMOSD and MOGAD

Whether you're living with MS, newly diagnosed, supporting a loved one, or simply interested in learning more, I'd be happy to answer your questions and share what we're learning in this rapidly evolving field.

A little about me: I specialize in MS and autoimmune neurology, with clinical and research interests that include MS, MOG antibody-associated disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, autoimmune encephalitis, and other inflammatory disorders of the nervous system. I was born in Ireland, and when I'm not thinking about MS, I'm usually keeping up with the Irish soccer and rugby teams.

You can learn more about me here: Dr. Eoin Flanagan's Mayo Clinic Profile
I'm looking forward to the conversation. Feel free to start leaving your questions, and I'll see you on August 24!

EDITED

Hi all! Caregiver here. My husband was recently diagnosed with MS. I’m hoping for some guidance on more ways I can support him through this new chapter in his life. He was first diagnosed with transverse myelitis and after developing lesions on his brain he was officially diagnosed a couple months ago. He says he has a lot of tingling in his legs and sometimes in his abdomen which makes him very nauseous. He’s on Cymbalta and modafinil plus once weekly vitamin D. We are waiting on approval for Kesimpta however, we are on state insurance so it’s taking quite a while for approval. I noticed when he was first diagnosed he seemed to get much worse almost immediately after his neurologist told us. I’ve been doing quite a bit of research and have shared with him things that I’ve learned but he doesn’t really seem too interested in trying any of my suggestions. He likes to sit in his car from the time I get off work at 7pm and doesn’t come in until around 1-2 in the morning. I’m sure he’s still just trying to process everything and I try really hard not to take it personally. I guess my question is has anyone with MS found sitting in the car to be helpful or harmful on any way? We do talk a lot about it and he really does have a positive attitude all things considered. I’m just worried he’s giving up. He still walks with a very steady and straight gait but does say he gets very tingly in his legs and feet. Any advice would be so helpful. He’s my whole world and I’ll do anything to support and help him in any way. Thanks for taking the time to read.

Thank you everyone this is all really great advice. I’m definitely going to back off a little bit and just remain available if he wants to talk symptoms or anything diagnoses related. I did forget to mention he does use alcohol and marijuana as a self medication (his doctor is fully aware) he never gets drunk but says that these things help him feel better. I’m assuming emotionally more than physically. Thank you all for the perspective I really do just want to be there for him in any and every way and if he needs space then I’m happy give it.