r/MultipleSclerosis

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

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!

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.

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.

hi all, just wanted to get your thoughts on what you think is the status of remyelination medicine trials? I know pipe 307 failed at one of their stages and remyelination is pretty much the holy grail, any thoughts on where we're at with this?

I got diagnosed with relapsing remitting MS today, and they want me to start treatment within the next month (I have the choice of either Ublituximab, Ocrelizumab, or Ofatimumab).

I am a bit shocked but I am mostly in denial. I have only had one significant episode, and it luckily did not result in any disability/long lasting symptoms. There are lesions everywhere in my brain but they are relatively small. I also feel generally okay. I am 25. It feels overwhelming and unnecessary (for me at this stage) to begin treatment so soon.

I trust the neurologist and the doctors, of course I do. But I’m processing and shocked. Has anyone been in my situation?

Family member has been having falls almost every single day. She has been taking Teriflunomide
For at least the last year, maybe even two however when we manufacturer changed that’s when she started experiencing some issues like she would throw up the medicine, experience stomach pains and I believe this is when she started to have high blood pressure. She was placed on meds for high blood pressure and started experiencing a metal taste therefore she wasn’t really eating food. Anyhow she went all of July without the MS meds due to insurance issues, she started the medication back however she continues to fall. It feels like even more recently.

Her PCP stated it’s the MS meds the neurologist is sayings it’s the BP meds we are going in circles here. Neurologist said it could be a manufacture issue because some put in additives and that if she isn’t feeling well he’ll have to take her off meds for 30 days and change her medication but that just sounds like we’re going backwards again.

Any advice suggestions ? A ER visit wouldn’t help right.

So, I have MS and am applying for diability benefits via social security in about three years. I just got accepted by the SSA, and was told to expect my first payment, the big one, at the end of this month/the start of next. I was wondering if anyone had any advice or tips on what to do next.

I live in Southern California if it matters

My fingers have been aching weirdly since the past few days, and I can barely balance myself as I am now consistently dizzy. Also have been having some...control issues. Being a full-time student I want to know if anybody else is struggling with things like this and how they are managing.

I have MRIs tomorrow, so time will tell if I’m having my first relapse since diagnosis, but my neurologist keeps saying it’s super rare for people ti have relapses while on Ocrevus.

I have RRMS, and have been on b cell assassins since 2017. I’m 51. I feel 85%sure my symptoms are a relapse, but her doubt makes me question.

It’ll be apparent one way or another tomorrow, but I’m thrown ofd by her doubt. I feel like plenty if people in this sub. Have “failed” Ocrevus. I know it’s a stronger one, but it happens, right? Like, it’s not crazy that a relapse is what’s happening? Having those old self doubt feelings like prediagnosis—“Am I really feeling what I think I am?!?”

Title says it all.

Hey everyone, j

Just writing because I need support and people who understand. I just found out I’m pregnant…. Three positive tests…. thing is I was diagnosed and started treatment in November 2025. We were not supposed to even think about kids until April… precautions were taken and obviously failed. I feel irresponsible and like I messed up bad. Scared about a relapse as I’m currently being worked up for possible optic neuritis. I was supposed to take my Kesimpta today… I feel lost and scared.

MS is a sh*tty disease. It can’t be cured, only slowed down. I was diagnosed 15 years ago. At that time it was determined that my first relapse was actually 20 years before, meaning I’ve had MS for 35 years. Once I completed 2 NYC and 1 LA marathons. Now I can’t walk without a walker. Once I could ride my bike 50 miles. Now I can’t get on my bike. I used to be an avid bread baker. Now I can’t stand up in my kitchen.

I have been on a b-cell therapy, which is classified as an immunosuppressant, for 14 years. During the height of the pandemic I was forced to live in a hotel for 3 months. The hotel was the NYC residence of flight crews of an international airline who were not fond of wearing masks. The circumstance of my hotel stay required me to be out shopping in as many stores as were open.

So now what? Do I sit home stewing in my loss of mobility? Do I live in a protective bubble, worried about every pronouncement of increased disease susceptibility? Or do I get on with life?

I can’t do anything about having MS and it has changed my life dramatically. But I can continue to live my life within my ever changing limitations. In May I traveled to South Africa for the second time in 2 years. Safaris are a life changing experience. I can no longer bake bread, so I have revived my interest in photography. You can take pictures sitting down. As they say in the MARINE Corps, "Improvise, adapt, and overcome".

I’ve stopped worrying that every twitch is a new symptom. I’ve stopped doom scrolling MS content on the internet.

I am living my life, and you can too😊

My last lesion and the one that got me diagnosed with MS is at c2/c3. I have had symptoms for 3 years but it was only recently diagnosed.

I now have such a lot of pain and stiffness in my back and thighs. I go to neurophysio which I think has helped the foot placement but my overall mobility has worsened due to all this pain and stiffness. Anyone else had this experience? I have been very unfit my entire life but was always a very fast walker, now extremely slow. Could this being unfit in general be making things worse?

Onset of MS, per medical records and symptoms, was a few weeks old. Diagnosed 20 years age (at 27). Been disabled for 12-ish years.

I have been being treated (poorly) for pain at a pain clinic for 7 to 8 years, but apparently I can only be (barely) comfortable for a maximum of 12 hours a day because they are worried I am going to become addicted to pain killers. I can only take 2 pain pills a day, which means I am const playing catch up. I had a SCS implant 2 years ago, it made it worse, but they refuse to remove it although the battery pack is poking me and moves.

I am at a loss what to do. They tricked me into getting the SCS. And then said I should be in less pain so they want me to stop my pain meds. I am thinking of contacting an attorney.

Hello, I wanted to ask if anyone has had ear issues related to ms, more specifically hyperacousy, an echo, or tinnitus?

One week ago, I suddenly started hearing sounds in my right ear with a metallic echo, kind of like if you speak near a ventilator. Then I developed tinnitus, as well as vertigo, dizziness, but now it is more brain fog rather than vertigo. I had headaches but not a lot, as well as nausea sometimes, and feeling like my calves are tighter. Sometimes the ear feels full.

The symptoms vary in intensity depending on the day/position (I think), however, it has not gone away. Like, for example, since last week I always have this metallic echo, but sometimes it's louder, sometimes less loud.

I went to an ear doctor to check if it's ear related, altho certain symptoms really did feel familiar from ms (brain fog, nausea, headache), but he said there's no ear problem he can see, and my audition is the same in both ears except that i'm more sensitive to loud sounds in the right ear.

My neurologist is not a ms specialist, so I know he will say it's not related, but I wanted to ask if anyone had a similar symptom, when the ear is normal, but you can hear this weird metallic echo in your ear when you speak or there is noise?

I've been on ocrevus for 5 months, but we don't know yet if my ms is under control because it's highly active and i had a relapse 1 month after starting the treatment. I'm supposed to have a new dose next month.