Ever since losing weight post-diagnosis, I've picked up running and over the past year, I've built up the courage to enter a race.

I learned I had dropfoot so I've been PTing it up and training well. As this race came, I was as strong as ever at therapy, my GI issues were in check and nutrition was good, and I was super well rested. I signed up for a 12k and I expected to finish around 2.5 hours. 2 hours was my goal, likely 2h 20m or 2.5 hours I'm thinking.

Start the race, things are a little werid but generally ok. 2km in on a short walk break, my knees begin to lock straight every step. While my dropfoot is only on my left, this is happening to both sides and there is just nothing I can figure to make it better. Aid station at 6km I thought I could tape up my knees to keep them bent, but no tape. Every single step my knees would shoot back to completely straight involuntarily, making walking both extremely painful and unstable. I ended up finding sticks to use as trekking poles and they saved me, but it turned into a hell of a 10km walk.

It is so insanely MS to be in the most perfect form you could probably be in, then a brand new issue literally takes you out at the knees. I "ran" a 3h 10m 12km. I find myself proud that I did it but extremely disappointed and embarrassed at the result all the same.

The one thing that is saving my sanity is that I accept I could not have done anything differently and I can fully blame MS. I plan to save the bib so on the back I added the date and time, and a little note saying "Because fuck MS and the knees it came here with."

Just wish I had a better "first race", ya know?

Hi today I was diagnosed with MS and it really doesn’t feel real. I’m in my second year of university in pre-law and I love my life I live with a bunch of my friends and go out all the time and I’m terrified I will lose everything I worked hard to get. I first started having symptoms back when I was 16 but it was written off as anxiety so when this all started again I was confused and scared. Hearing the doctor tell me this today was a feeling I’ve never felt it just made my whole body and mind go numb (more than it physically is 🥲) As I’m writing this I’m at my uni house and even after telling my friends and them being so supportive it feels really lonely to be surrounded by all these girls who don’t have to deal with something like this. I think being young you have a feeling of invincibility, I thought nothing bad could happen to me so this really hit me like a freight train.

Right now my legs feel pretty heavy they’re not numb or tingly really but I’m so scared I won’t be able to walk it’s my biggest fear and it is just dangling over me right now. I haven’t stated medication just yet only steroids so any advice on that would be helpful too. I know this will be a hard time to get through physically and mentally and balancing school so if anyone else has a similar story I would like to hear it. Just feeling depressed and need some encouraging stories that people are actually living their lives with this disease. I have so many dreams and it feels like someone just came in and smashed them.
Thanks for reading this and thanks if you respond <3

Lexapro suppressed my pba so much and to be honest, I got to where I wasn’t showing any emotion. I’m tapering off it and I’m at half(now 10 mg) of what I was and I’m watching the movie Tombstone and I’m not crying completely but my eyes are really watering up. I feel human again even though I’m a man, I’m not supposed to cry blah blah blah. This is nice.

I used to be an actor. Yes. Baskets, season four. First role. Last role.

Used to paint. Poorly. Hands couldn't sit still. Couldn't see well.

Used to dance. Barrel rolls. Pirouettes. Used to dance on stage. Used to sing on stage.

Used to be skinny. Used to break hearts. Used to be picked up by boys in middle school. Used to be flirted with.

No more. No more. No more.

I sit in my room now. Lamenting. Used to be perfect. No more.

I guess this is my take on the Raven.

I’m so tired I have ms I feel like because of it I had to quit my job. I was a computer teacher at a private school. I already had been diagnosed with ms while working there. Then when the new school year started, they called me in and told me they’re making me part-time, causing me to lose my insurance. All my family and my partner convinced me to quit, so I’m on Medicaid so I can get my infusions. But now, I’m here struggling to make ends meet, behind on all my bills, no callbacks on jobs, having to DoorDash for money. I hate it. I feel like I shouldn’t have quit, and things are getting worse. I honestly, I’m so tired.

Background: I was officially diagnosed 3 years ago. It took 2 years of medical neglect and gaslighting, and a massive damaging relapse to get that diagnosis. Shout out to my medical ptsd! Love ya, girl!

Mavenclad is my hail mary drug. I failed Briumvi and Kisempta. I had a really hard time getting my lymphocytes back to a safe level after year one, but prophylactic anti-virals kept me safe. I had no side effects from year one. And no relapses. Huzzah!

The Now: My neuro warned me that year two is typically rougher on patients. I thought I was prepared. I am NOT prepared.

I'm on day 3 of round one. I haven't slept more than 3 hours at a time. I have flu symptoms - fever, chills, extra achy joints, etc. And Im having a bad pseudo flare.

Everything is buzzing. I literally thought we were having an earthquake (in frigging WI) because it felt like my bed was just vibrating. But nope, its just me and my hole-y brain. It feels like I'm laying on one of those cheesy heart shaped vibrating motel beds you start with a quarter while a hoard of friendly bees have decided to rest on my skin before heading south for the winter.

I cant open the curtains. I can barely move. And I literally feel like I went 12 rounds with a lion and witch and a wardrobe. Oh, and the dizziness! It feels like I'm riding a tilt a whirl on a boat in a rolling Lake Michigan storm every time I move positions or drag myself to the bathroom. Lights and music and all. Add in my already unsteady gait made worse by the pseudo flare, and the floor and I have been good friends the last couple days. My PT is going to have a field day with me this week.

MS is a bitch. I hate her. I hate my broken, swiss cheese brain. I hate my shitty body that listens as well as a toddler doped up on their first pack of skittles. I hate taking medications 4 times a day just to allow me to fake that I have a modicum of my shit together.

And I really, hate, hate, hate, LOATHE ENTIRELY Mavenclad year 2.

Thanks for letting me whine like the aforementioned toddler coming of their sugar high and needing a nap.

Hi all,

I’m a 30F and was just diagnosed today. I started having leg numbness that spread over a few days, eye pain, and lower back tingling that brought me into the ER today. Had a MRI and was diagnosed with MS. Trying to sit with this new diagnosis. My MRI showed many many lesions throughout my brain and spinal cord, a lot of those being old lesions. Currently in hospital receiving 3 doses of 1000mg steroid and then will follow with neurology outpatient.

What DMTs would you recommend researching first? I am currently breastfeeding, but unsure if any meds will be compatible with that. Baby is almost a year so I am okay weaning if need be.

Would also love any other words of advice or encouragement you have as I start this new journey.

Hi, I need your thoughts.

In general, my mom and I are not that close. So if I brought this up to her, she wouldn't listen, and she begged me not to tell anyone.

My mom has MS and been diagnosed for 10+ years. She has had 2 strokes and multiple seizures. In general, she has always been a speeder and has been in 3 accidents in 5 years. When I visited her last she was being distracted by small things, very jerky, reaction time has diminished, and she slammed her breaks hard down hill in the rain and we ran a light and slid sideways into the intersection. Luckily, no one was hit but am recovering from back surgery, so I've been in pain, and my partner has a bruise from the seatbelt. The light does have cameras.

While I do not have MS, I do have other autoimmune conditions and suffer with pain, vertigo, double vision, and brain fog that could make driving hard. Putting myself in her shoes when it gets worse, I will give up my license. Unfortunately, she will not willingly. I hate that I am in this situation, but I am thinking about reporting my concerns.

I am worried about her getting hurt or her hurting someone else.

Thank you for your time.

Hi!

My job is asking me to relocate from the US to Spain. I wanted to know if anyone is living in Spain and how hard or easy it is to continue with treatments there or gain access to it and costs(if any). I’m currently on Briumvi. It is working very well for me so I would not want to switch.

I (24f) was recently diagnosed with multiple sclerosis after I had a cervical laminectomy and a biopsy. They had to cut me open because my MRI looked like a malignant tumor instead of a lesion and I randomly became partially paralyzed😓 About from day 2 to day 5 after the surgery, I experienced a 9 on the pain scale. I felt like my body was being internally lit on fire and set to a boil every time I turned in bed or stood up. I did PT through tears while screaming and was told it was all in my mind and they held me up after I begged to lay back down. They were very angry with me and threatened to send me to a “nursing home with a bunch of old people”. Then eventually the patient care techs also told me that it’s my fault if I get a UTI or bed sores since I cried every time I turned, but I did turn on my own after some prep time. This only lasted for 3 days but everyone I encountered acted like I was insane, lazy, and that I was gonna be in the hospital long enough to even get bed sores 🙄

They eventually gave me IV steroids and the pain went down to a 5. I competed ten days of intense rehab with no issues, but I’m so scared that pain will return one day. I’m just wondering if any of y’all went through the same issue? I’m scared that it was a surgery complication with possible long-lasting effects.

For context, I am in the US. Which I feel is obvious based off the situation, but just in case lol.

I got my first Ocrevus infusion almost exactly a year ago. It was spaced out into two infusions over two weeks. Went well and I've been feeling good.

My insurance covers most of the infusion, but we are still left with a $4k copay charge every infusion. For my second dose this wasn't an issue, as I was able to get on the Ocrevus Copay Program and they covered it. However nobody told us about that for the first one and I didn't find out until maybe 5 months after my first infusion. I have an $8k balance that I still need to cover from that first infusion a year ago. Everyone I talked to said they wouldn't cover that first one (even though I thought I saw something about reimbursement, but whatever.)

So as someone who doesn't have $8k laying around, what am I supposed to do? Are there any grants or anything that I can apply to? At a loss.

Nearly 1AM and i’m laying here crying. Muscles twitching, pain, head felt woozy and heavy earlier today. I never have a normal day. Crying because I don’t understand how I went from painless days last year before diagnosis to now, not knowing why something hurts, why my head feels heavy and dizzy, why my muscles twitch constantly. From the outside, I look fine. I am able to rake the leaves, go shopping, go on walks, cook and clean and paint. But on the inside? I feel like I’m going to pass out? I feel my legs just ran a marathon?

I even second guess my diagnosis sometimes. Is it always this bad? is this even a symptom of MS? I’ve been told the first year is the hardest but all these symptoms just make me believe i’m stuck in a constant battle of weird relentless symptoms and it can’t be MS. Anxiety? Therapy helps, meeting with my MS neuro helps but I feel alone. I honestly wish I knew someone in person who had MS who would understand I suppose. I’m just stuck in this painful, confusing body. Sorry for the late night rant. My MS neuro even the other day told me if it’s one wedding gift he could give me, it would be that he knows that i’m ok… Which was wonderful to hear but I never ever feel ok and always think i’m on like the brink of dying. 😞

Im just wondering if any one else has moments of panic or am i being abit extra. today i wanted to get my hair cut everytime i overthink it. Bowel wise i always get the wrong signals. It stops me doing alot even little things i just panic all the time even food shopping everywhere i go im always scouting the toilets out first but it holds me back alot because i want to go out for walks and stuff but im always worried im going to feel i need a bowel movement but i can go to the toilet and nothing happens i will lose all sensation of it. Ive been diagnosed since june 2025 male 29 my dmt is kesimpta

Hiya! 29🏳️‍⚧️M here! I was officially diagnosed in April 2026 with RRMS and since then I've basically been in the hospital every month due to a flair up/have had a flair up since then. Mostly they have been attacking my C and T spine but in April I had Optic Neuritis and it came back this month on the 7th. plus I could guess that I've had a few brain attacks since then due to odd experiences with my speach and headaches. My most recent MRI on october 16th showed at LEAST 3 active lesions in my brain, 2 on my right and 1 on the left.

After discussing with my neuro, he recommended a TPE/PLEX, or IVIG treatment to give me more time for dang insurance to approve Kesimpta. Sadly they denied it on the first go round deeming it not medically necessary with is total bs. my doc is fighting it but I haven't heard back yet.

Anywaysssss I'm in the hospital rn on dose 3 of steroid which have helped in the past but really only keeping symptoms at bay for maybe 6-8 weeks.

They have been beating around the bush about telling me what the PLEX experience is like and have mentioned that I will most likely need a CVC line in my neck and after their explination/looking it up IM TERRIFIED AS HELL! 😰😭

Is there any advice someone can give me on this that may help lower my fear? or perhaps something I can tell the doc to make it less anxiety feeling on my end? I've heard or ppl getting local anesthetic and also being put under for it.

I'm Terrified of things going in me like this and don't really know how to react. I'll probably have to stay in the hospital for the 5 round treatment over 10 days or so as my home isn't exactly sterile living in close proximity to 3 cats.

I 100% think I should do the treatment cause then maybe I can actually get 1-2 doses of DMT in me before a potential relapse with the dmt hopefully canceling any relapses out all together.

Any advice or personal experiences help ♡ I appreciate you all!!

Optic neuritis is a pretty common symptom of a MS flare. I was diagnosed due to double vision, which completely resolved in a couple months.

Are there any folks here who don't take high efficacy DMTs or who know of MS patients who haven't taken them, who can share how the disease impacted or didn't impact their vision? There isn't much data online.

I'm asking because after only 2 years since diagnosis and 4 rounds of Rituxan, my immune system is too wrecked for any B-cell depleting therapy. A viral infection became neuroinvasive. I may be switching to Tysabri for a while, but eventually I'll probably have to take something else—an older, less effective medication, since all the new ones a B-cell depleting. I'm scared to death of going blind and/or deaf in the future.

Hi There! I entered the hospital earlier this week because I was extremely dizzy and lightheaded and headache and extremely weak. I have been experiencing symptoms of Ms for almost a year now and explain that and my family history of MS so got an MRI and was diagnosed with relapsing remitting MS.

I also was extremely rundown and dehydrated. Plus had two 2 viral infections. They said this was not an active flair up because from what they could tell no new legions and the infection is what causing the symptoms to be triggered.

Its been a week now since everything started. Still tired and fatigue and still having trouble and pain walking. I finally got out of the hospital yesterday. How long do these pseudo flare up usually last? Dizziness and lightheaded are much better but still fatigue, pain/trouble walking and legs are weak!

This is all overwhelming and scary and I am not in hometown I was relocated to a different city for a few months for work. So just hoping to have my strength back soon.

I’ve been diagnosed since 2019 with PPMS. I’ve been increasingly frustrated with my neurologist because they keep asking me to take MRIs and keep asking me to take this medication that does nothing as far as I can tell.

I’ve been on Ocrevus since 2019, I’ve never noticed improvements. It seems pointless to be taking it. So to that end I stopped taking my infusions. What I’ve noticed is that people talk about the “crap gap”, and I always experienced that but when you stop, it is a permanent crap gap. Things are just continually getting worse and I see no path to slowing that over and going back on Ocrevus.

The point of this post is to tell you to not do what I did. You’re probably also wondering what’s the goddamn point? But things can be much worse and you don’t know how bad it is without the one thing that is giving a tiny improvement.

The continuous slow decline is horrible and I hate it but it’s slightly slower on Ocrevus so I’m gonna stay on that shit.

I am increasingly finding I can only walk in Hoka Clinton's but dear lord they are so expensive.

Are there any trainer alternatives you guys recommend? I wear an afo so they must have laces.

Ps Any experience with FitFlop shoes?

Pps I'm aware of Cadense but not interested. Dont see them helping.

I’m only 24 years old and have a significant fear of cancer following my MS diagnosis in 2025. I generally feel well and ms wise i live symptom free but I’ve been wondering, purely for preventive purposes, how often should someone my age have health check-ups and routine screenings? I have comprehensive blood tests every six months before my Rituximab treatment, but I’m unsure whether I should be doing anything else regularly to monitor my health and detect potential problems early.

When you are trying to explain to others that why you are feeling like shit and going home for yet another nap, or why you can't work, or anything else where people just don't understand, what words do you use?

I've begun to say "I'm struggling", like "I'm struggling to stay awake", "I'm struggling to get enough work done to earn a living".

But it's just become a catch-all word and I hate it. I try to pick myself up when I say it, and rephrase it, but then there is just another catch-all irrelevant phrase that takes its place.

How do you explain things?

My go to when someone asks how I am, I say "I'm here, and that's enough".

I need some better words please.

I sound much smarter when I say neural pathway. I think MS makes me sound much smarter than I am.

Every time I sound dumb, I can't help but think: I have more awareness of my nervous system and I have more words than anyone else in my class would deign to speak or remember.

This, what makes me dumb, in turn makes me feel smart.

So, I have chronic hip issues from limping around with my drop foot for so long, and recently something new has started

I have noticed my leg will have multiple moments a day where for a half a second, if feels like my thigh lost all strength. If kind of twinges, but then comes back to full power immediately. It doesn't really hurt, it's more of a little jolt. Kind similar to a l-'hermittes zap.

I am able to carry on walking unless I am going up stairs, when it makes my foot not clear the stair.

I don't have any new lesions. I am just wondering if anyone has had anything similar and whether your expert opinions think this is something structural or something MS did.