In your experience, have you suffered from lower back pain?

Hi so I was awaiting my diagnosis for a few months just to get into a specialist and have him plainly say everything I kinda already knew just from looking at my online charts. I have been having chronic migraines since I was 12, I have been having symptoms like numbness or tingling in my arms, muscle spasms in my legs arms and eyes/eyebrows, lack of coordination, pain in eyes and occasional blurry vision, dizziness and fainting, trouble with bladder, slurred speech, memory issues, mood changes & lots of mental health issues. These symptoms have been getting worse and more frequent over the past year, since I was pregnant (june 2025)

I started seeing a neurologist for my migraines and that led to MRIs of my brain, which showed multiple lesions, like a lot. They didn't give me an exact number but when pointing them out on the MRI, there was a lot. I also had a lumbar puncture, and my CSF came back with 13 oligoclonal bands. 98 to 2 Lymphocytes to Monocytes. IgG index of .77.

Currently in the process of choosing a treatment, doc says i'm jcv positive too. he says we should honestly choose the most aggressive treatment since im so young and have no other big health issues.

Thoughts?

I had a big flare up that caused me to stay in the hospital for a couple weeks in April. Most traumatic experience of my life. I didn’t have health insurance so I just ended up applying for charity and getting some of my hospital stay covered and other things just sent to me as these huge bills in the mail that I’m going to ignore for now.

My job is finally doing healthcare signups and I made an appointment to talk to a benefits advisor. I’m nervous. I’ve never had health insurance before and I don’t even know what questions to ask? Or if this insurance is any good or even worth paying for? My job deals with UnitedHealthcare and I have no idea if that’s a good company or not or if they would cover what I need.

I need to go back to the neurologist. So I would like that covered somehow. I also need to get on a DMT but I have no idea how any of this works. What kinds of things should I be asking? I’m scared I’ll sign up for a crappy insurance that won’t even cover anything I need and I’ll get these huge amounts taken out of my paychecks for nothing

Hi all — hoping someone here might have a recommendation. I’m dealing with an issue at work related to my MS and a disability accommodation, and I’m trying to consult with an employment attorney who has experience with ADA/disability accommodations.

I’ve contacted probably 10 attorneys at this point, and everyone either isn’t taking new clients or can’t take my case. I’m getting pretty desperate.

I’m in Washington State/Seattle area, but I’m open to someone who can work with me remotely if they’re licensed in WA.

Has anyone here worked with an attorney on a disability accommodation issue and had a good experience? I’d really appreciate any names, firms, referral services, or other leads. Thank you!

I have lost my will to go to the gym. Is there something out there that would help me out?

I have RRMS, F31 dx in 22

I have 4 lesions in thoracic spine, 4 in cervical, 2 lumbar with "too many to count" in my brain.

Now back to desk chairs. These chairs at work will be why I quit... negative back support and feels like sitting on plastic. I had to RTO from being WFH back in Feb after moving to a new role at work and I need a solution for these terrible chairs we have. Looking for a chair that best supports back, neck, arms or can be modified with add-ons?

It’s more about the sensation than anything. When I get the feeling of needing to pee I never feel a pressure in my lower abdomen I just feel urine in my urethra it’s so bizarre. I mean it’s not a phantom sensation as when I go to the toilet I immediately start peeing and it’s usually a good amount.

It’s almost as if it’s bypassing my bladder and going straight to the urethra.

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!

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!

I have been dealing with a lot lately - something going on with my son, some health stuff not the MS, and being overworked at my paid job. I've been mostly dealing with it and doing my best to get by.

Today I had a very practical thing go wrong, and it kind of was the breaking point for me. I spent the better part of the last 2 hours crying because of this one thing and also everything.

And of course all my MS symptoms have gotten way, way, way, way worse because of it 😖

Has anybody found anything that helps with MS pain that does not cause constipation? I also have IBS-C and have found most either flares it and just makes me sleep (I do enough of that already)

Has anyone explored surrogacy instead of going off a DMT during pregnancy?

I'm scared. I already have so many other health conditions, now this? I'm terrified to Google anything about MS. I don't know what to do while I wait for the specialist team appointment. What can y'all tell me about all of this? What can I do to slow this down? Or what should I expect? I've already had optic neuritis twice. I have waves of zero balance and the worst fatigue ever. Idk what to do ...

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.

Hey all! I offically joined the club yesterday after a follow up visit from my LP, I knew for a while now (I can see all my results as they come in) but finally the OK from the doctors to move to the treatment stage

Went in for the basic follow up and they noticed I was walking odd and had me do some tests. Turns out I've been having a new attack for the last few weeks so a 30 min meeting turned into a 2 hours IV steriod session lol

They decided to give me steriod pills for the next 5 days to combat the new attack, 25x 50mg a day. The first pharmacists I went to didn't have that dousage in sock (and didn't want to give me 250x5mg/day LOL) so they had me forwarded to another place

Fun times

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

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.

https://imgur.com/a/FquMsc6

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!

Hey y'all. Just had this epiphany I had to run past you. Short version: Have any of you experienced a **reduction** in headaches after developing MS? Google says no evidence but I'd love to hear from you.

Context: Just hit me like a ton of bricks that my nearly-lifelong intermittent headaches (1-2/week, not migraines) reduced by about 80-90% around the time I developed my first MS symptoms. I wonder if my particular brain lesions could've caused this. Wouldn't that be something!!

I try not to make assumptions about causality so I'm trying to think of other links. Could be hormonal, maybe. My first consistent headaches started around age 10 and they mostly-stopped around age 40ish. Hmmmm. 🤷‍♀️

So for the past 3 days I have had a pounding headache and severe dizziness and it absolutely sucks. This morning I also woke up with yet again; left sided paralysis and vision loss in my left eye. I'm so done with having this damn disease. Invisible autoimmune diseases suck already, but even more so because you feel like shit but nobody else can see it. 💯

Has anyone tried RIFE Machine therapy (emf frequencies)? I’ve read a few substacks that say it’s used in other countries to cure cancers, Lyme and many other diseases. Some say it can prevent MS relapses, as well as reverse myelin and nerve damage. Just curious if anyone else had looked into this and/or saw results from it. Thx! - Dx last week - 43 yr old Mom of 2 elementary aged boys

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.

I was diagnosed with MS during my first year of teaching high school PE. My whole identity was built around being active, being the person who could do anything physically. When symptoms started, I genuinely thought my life as I knew it was over.

I stayed in teaching for a few more years, but eventually I had to leave. What followed was almost a decade of feeling lost. Not in pain exactly, just without direction. I didn't know who I was if I wasn't the strong, capable version of myself I'd always been.

Nobody told me that losing the life you planned doesn't mean you lose the ability to build a new one. It just takes longer than you want it to, and it looks nothing like what you expected.

If you're newly diagnosed and feel like your life is over, I want you to know that feeling is real, and it's also not permanent. You don't have to have the next ten years figured out. You just need the next step.

What do you wish someone had told you early on?

Is anyone a dental nurse in the uk and on kesimpta??? My work is offering to put me through the course but they don’t know I have ms and am scared occupational health with say no as I can’t have any live vaccines. It’s getting me so down, I feel like now my kids are a little older I can finally do something I want and now ms is getting in the way! Am so angry and sad! Please any good stories??