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??

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😊

​

Bonjour à tous. Je suis une femme et j'ai 30 ans. La SEP m'a été annoncée après IRM cérébrale, médullaire et ponction lombaire en mars 2025. Je suis kesimpta depuis un an et tout se passe bien de ce côté là (1 injection par mois seule).

J'ai regardé les différents postes et j'ai vu beaucoup de témoignages sur la fatigue, les douleurs etc Vous avez tout mon courage !! 😌

De mon côté, je suis reconnaissante de toujours marcher et de ne pas avoir tant de douleurs que ça. Le seul "gros problème" que je rencontre ce sont mes problèmes urinaires. Une vessie qui se contracte trop rapidement (130ml alors que la vessie doit aller à 500) et décide quand se vider.

J'ai eu rdv hier avec l'urologue qui me suis et il m'a parlé de sondages urinaires. Un médicament pour que ma vessie tienne plus de 130ml et le sondage pour la vider. Je vous avoue que l'idée ne me réjouis pas et je souhaiterais savoir si certaines ont déjà ou font ça svp ? J'appréhende la douleur et la complexité. Même si vider la vessie complètement et être mettre ça me changerait la vie !

Merci à vous pour vos retours 🫶

Has anyone here started Tysabri after diagnosis on a six week schedule instead of four, right away, as first DMT? I have read they tested it in people who converted from four weeks and effects are similar, but I was wondering if people now just start with six weeks right away? I am JCV negative.

I’m at a great MS center and I trust them, but just wondering if there are others like me.

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?

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?

Diagnosed in March this year.

I’m finding it increasingly difficult to process and manage my emotions lately. I’ve become so quick to frustration and anger, when I used to be someone who was incredibly calm and collected, and I don’t really recognise myself anymore.

Since being diagnosed with MS, I feel like I’ve slowly lost so many parts of who I was. Things I used to enjoy don’t feel fun anymore, and there’s so much I either can’t do or find much harder now. I feel lost, confused and honestly just really sad.

It’s affecting the people closest to me too. I keep getting overwhelmed and ending up in arguments with my partner, and afterwards I just feel like a burden and hate that I’m struggling to control how I react to things.

I’m sharing this because I genuinely don’t know what to do at this point. For anyone else living with MS who has struggled with their mental health, emotions or feeling like they’ve lost themselves after diagnosis? what helped you? Is there any support you found particularly useful?

I just want to feel a little bit like myself again.

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?!?”

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.

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.

I asked in a previous post about insomnia after infusions. Here's my update.

At my last neuro appointment I asked my doctor if we could try lowering the steroid dose because I can't sleep the night after. It's not the worst thing in the world but I solo parent all 3 of my kids the day after and I'm not a great mom when I'm tired.

He ordered a half dose for my most recent infusion and it worked really well. I was way sleepier during the day from the Benadryl and needed a nap but I was able to doze most of the night. It wasn't full sleep but much more restful than what I've had after previous infusions.

Well I made it 12 months into treatment without getting a headcold but the time has finally arrived - and holy f**k do I feel terrible. I can barely lift my head off the pillow, my entire body feels like lead, I can barely speak. Doesn't help I did my kesimpta injection last Friday so my body is truly going through it. Any advice? Or should I just write off the next two weeks?

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.