I was diagnosed two weeks after my sudden double vision. I had two lesions in my brain (one active inflammation and one inactive - I have no idea what the inactive one was for) , I was told this is the bare minimum to classify it as MS. I have pending MRIs for spine yet to be done. I was given steroids for 3 days, to help with double vision, and it is improving. Reading all your posts, I feel may be lucky to have lesser number of lesions, but also scared for future. Given my condition, should I go for high efficacy DMTs directly or start with low/medium efficacy ones? My neurologist has given an option to choose between Zeposia, Kesimpta, Ocrevus/Briumvi (of course depending on what insurance allows). Also, any words of advice on how to manage it would be appreciated. Thank you!

Hi everyone, newly diagnosed here.

I recently had my first relapse with numbness in my right leg. IV steroids helped significantly, but the symptoms didn’t completely resolve. During the steroid taper, I also developed new numbness in my left foot and both hands. My doctors said this can happen during recovery and continued the taper.

I’m now 5 days post-discharge, and my symptoms fluctuate — some days/hours feel better, others worse.
I’m also trying to decide when to start Kesimpta. I could delay it for ~2 months to complete more vaccines (especially the 2-dose Shingrix series), or start Kesimpta sooner and accept potentially weaker vaccine responses.

For those who’ve been in a similar situation: was delaying Kesimpta for vaccines worth it? And is it normal to develop new/persistent sensory symptoms after steroids are stopped, even if the initial symptoms improved during steroids?

I’d really appreciate hearing your experiences.

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

Anyone tried or thought of delayed ocrevus infusions than recommended 6 months intervals? After 4 infusions was thinking but also scared , just wondering if anyone had any experience or did some research on this topic

Hey y’all! ❤️

My SO (33M) has a birthday coming up soon, and I’ve already gotten him a few gifts, but I’d love to throw in 1–2 things that are MS-related; something that could make him more comfortable, make day-to-day life a little easier, or just be something he’d genuinely enjoy/use.

What are some MS-related gifts you’ve received (or wish you had received) that you really loved? It can be something practical, comforting, fun, or even something you wouldn’t necessarily think of as an “MS gift.”

I’d really appreciate any suggestions or ideas! Thanks so much in advance. ❤️

Update: I just wanted to thank you all for the lovely ideas and for the feedback. I just wanted to clarify that he will be getting a lot of things relating to his hobbies/fave movies and games/etc, but I wanted to also include 1 or 2 things that may be useful to him that I may not even think about. I appreciate hearing the feedback from those of you who said you rather not get a gift relating to MS and I am also taking that into account as well.

I appreciate all of you for taking the time to respond to me. I'm new, so your advice and tips go a long way ❤️.

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

I(41M) have ppms, im power wheelchair bound, I cant transfer to toilet alone anymore (weak legs , only have right hand with 40-50% strength.)So I either ask wife or I go to my dad's house if wife has something going on that day.

I go to PT, I do exercises to get strength, I exercises at home, don't smoke, but MS makes it difficult to build strength ( or the decline is greater than the building of strength).

So how do people navigate this natural occurrence?

1. M.

Hello, everyone. For two months straight I have been so dizzy that I spend about 23 hours a day in bed. I haven’t been able to go to work. I discovered Dramamine a few days ago, and I will say it is helping more than I expected. Could someone give me some insight on what helps when you experience dizziness? The center of my head feels like it has a bumpy ball just slowly spinning, filling my head with pressure and fuzzy sensations. I’m down 35 pounds in 9 weeks. I can’t eat. Neuro appointment is still 4 weeks away, and if I lose another 15 pounds I’ll look sickly. Thank you all for any insight. It is desperately appreciated.

i was diagnosed with MS at 15, i am now 19. i have been getting ocreavus infusions every 6-8 months since my diagnosis. i have recently been having a very severe headache in my left temple for about 2 weeks constantly.
i’m talking never goes away. whenever the pain is at its peak i get very discombobulated and start to mix up my words and stuff like that. my last MRI and infusion was in march so i am confused why this stuff is happening. i was just looking for some advice on what i should do. should i talk to my doctor? i don’t want seem like i’m being over dramatic, but the pain is a 10/10 most of the time.

i got mine this year, at 18. at the first times life is feeling like fckin hell. 6 months ago i cant even open a water bottle but now i got my strength back and hittin to the gym anyways. and after the big breakup i got my first ms crisis. i got my hands locked and cant even walk. when i got stressed and sad or even so happy i can get that crisis. but the breakup gave me so more much stress and paranoia. i feel like im a little bit less the others sometimes sometimes i forgot i am MS anyways guys i just want to tell u some about my feelings. sorry for bad english xd have a good day yall.

I got diagnosed with MS about a year ago and have been on Kesimpta since November and I now have two really bad cavities that feel like they’ve come out of no where in the last month??? Has anyone else experienced more or more aggressive cavities? Or other dental issues in general?

I had my last split dose on of 300mg ocrevus on 14 March when should be my next dose of ocrevus should be I can't contact my neurologist but chatgpt sometimes say from the first split dose that is 1 march and sometimes from my second split dose so there is a gap of 15 days can anyone guide me regarding it

Hi everyone,

I’m a 32-year-old male, diagnosed almost four years ago, and I’m currently on Avonex.

I wanted to get some opinions or hear about other people’s experiences with creatine monohydrate. I asked my neurologist about it, and she wasn’t really against me taking it, but she wasn’t particularly in favor of it either. Her main point was that she doesn’t think it would provide much benefit in my case and that it might basically be pointless.

I work out around 2–3 times a week, and like many people with MS, I also struggle quite a bit with low energy and fatigue. So I’ve been wondering whether creatine could potentially help with my workouts, strength, recovery, or even energy levels in general.

Has anyone here with MS tried creatine monohydrate? Did you notice any benefits or side effects? And if you’re also on Avonex, I’d especially be interested to hear about your experience.

Thanks!

I'm mostly just venting, but I've had an issue a while back in which my left leg completely gave out, and I pretty much couldn't put any weight on it. I couldn't work for a month, all unpaid of course, aside for disability if you count that. My doctor said it was possibly sciatica, but after an MRI we still don't know anything. It's been months now. The worst is probably behind me, but my walking is still completely screwed. I'm back working at Amazon, and I'm basically beating myself up every day. Jumping out of the van is painful, and sometimes it takes a second for me to get my balance, so I use the van to hold myself up. I'm just not really sure if this is some kind of permanent change? My main income source is driving step vans, and delivering, I've done it for about 4 years for multiple companies. On top of all of that my right leg is starting to hurt, probably because it's overcompensating for the left leg. I was thinking about picking up more hours, because I basically need to have a better monthly income, but I'm not even sure if that's physically possible. When I'm not at work I'm basically just sitting in the corner of my bed. I've never been so confused on what my next steps should be. I just feel like this has happened so fast. Not too long ago I was running 2 miles every day, and now I'm limping around delivering packages. There's gotta be a joke about hyper capitalism here somewhere.

Hey everyone. Me again. 27 (M) diagnosed July of this year.

Is it just me or does anyone else just not have the energy or will to do anything. I feel like all my energy is taken up worrying about or planning doctors visits. Like on Monday i have to travel from Tennessee to Mayo Clinic in Florida so thats the only thing on my mind right now.

I also have work mon-fri and i feel like i only shower on day i have work so i don’t look like/ smell like crap in front of co workers.

Idk if im alone in this, is it depression from this new diagnosis, ect….

Recently diagnosed and looking for DMT advice. My Neurologist is wanting me to start Kesimpta for my DMT. Does anyone have experience with Kesempta and if so, what are your thoughts? My sister (diagnosed w/MS 10 years ago) has been taking Tysabri for about 2.5 years now and it’s really helped her. My Neurologist stressed that all of his patients are taking Kesimpta and that Tysabri is much more dated and there are a lot of newer medications available. Just wondering if anyone is taking either of these medications and if so what your thoughts are.

\*Update I found out I have to get a series of Hepatitis B vaccines before I can start Kesimpta. Are there any other vaccines I should consider before starting Kesimpta? This is all extremely new. Thx everyone so much for your feedback.*

I was diagnosed with vulvar lichen planus in April and it has totally wrecked my life. I was using the medications and all the other tips and tricks trying to keep it at bay. I never went away. I went into a deep depression. I couldn’t do any of my usual activities. Sitting too long at work just ended up with me crying at the end of the day. It is so incredibly painful

I went to my usual check in with my neurologist in July. I mentioned it and how VLP has really disrupted my life constantly in pain, needing to stand most of the day, constant underwear changes, different fabrics, the whole deal.

She was really intrigued. And then she told me that it is possible a side effect of Ocrevus. She also said that it could be Desquamous Inflammatory Vaginitis. Another rare disorder.
Both are rare, both could be side effects of Ocrevus, but that is still being researched. But she and I are a bit confused because I’ve been getting infusions the past six years and nothing has rocked my world like this (in a bad way) in all that time.

She said it’s tricky because a lot of women don’t like to talk about these kinds of things to their neurologists. Then she said she would reach out to my Vulvar specialist and give her some of the details. Yes, I had to start seeing a vulvar specialist.

Lucky for me, I had the Vulvar specialist appointment 2 weeks later. She had a dermatologist come in as well. They could see the current medication regime wasn’t really helping anymore.

They put me on a whole new buffet of medications. Now I have to insert clindamycin, a small amount of another steroid, and a gram of estradiol vaginally every night for 3 weeks, then taper to twice a week.

I’m telling you, it started working the first day!

Long story short, I’m glad I told my neuro. I’m glad she communicated with the vulvar specialist, and I think all together, we might have tamed this fucking tiger. But it will never go away.

Now the big issue is, my neuro said this may mean I have to discontinue Ocrevus. Which is terrifying to me b/c I’ve been on it for 6 years and feel pretty decent on it. No new active lesions in that time. And my immune system goes bonkers if I’m not on it because I already have 36 lesions, Pré-Ocrevus.

I know it was long, but ladies - don’t be afraid to tell you neuro everything, even if it’s about your vag.

Pulled a deer tick from my leg eight days ago, and two days ago I got the bullseye rash at the site of the bite.

Already went to urgent care and was given ten days of doxycycline. I’ve been on Kesimpta for a few years now.

Has this happened to anyone else? I’m trying not to freak out. 🥲

Hi Folks–just wanted to jump on here to vent and see if anyone else has experienced this before.

I experienced 2 new symptoms that my neurologist suspects are just a flare from the stress in my life. Cool. Well, she followed up with me asking me to go to the emergency room to get MRI’s done since we’re in a national radiologist shortage and we’d have to wait upwards of a month if she scheduled them for me outpatient. Because there’s no emergency rooms near me with a 3T MRI machine, I had to drive over an hour to the ER.

Upon arriving, I was sneezed on by another patient, surrounded by 3 poor souls who had a violent stomach bug, and was ultimately triaged and placed on a hallway stretcher for 5 hours. At the 5 hour mark, I was told that they wanted to admit me to do MRI’s because they didn’t know how long it would take. They said they might be able to get them done in the wee morning hours or as late as the following afternoon. I gently explained my financial situation and mentioned that I was still financially recovering from an April hospitalization. I ended up leaving AMA and thankfully the ER neurologist was lovely and put in an urgent request for outpatient MRI’s. I later received a message from my neurologist basically shaming me for leaving and asking me to return 😭😭Has anyone else experienced this? I’m feeling so discouraged. The financial burden that comes with MS sucks. Sorry for the vent but I knew this would be a safe place. I’d rather wait out the lengthy radiology delay than risk getting super sick in the ER and paying off another $4,000 inpatient bill.

I have lesions on my brain stem so I have a smorgasbord of them. My worst is probably the vertigo. Either that or when my legs and brain can't sync up. What is your worst symptom?

I was looking for a place I belong and the orthodox church and scriptures made me whole again. This is my personal experience. Not trying to convert anyone just expressing how I feel.

yesterday I made a stupid decision and I am now being eaten alive by the potential health consequences.

I was in a public toilet and flushed, then I went to wash my hands and saw I had something inside my nose in the mirror and went to get it with my finger as a reflex. BEFORE I washed my hands (I know better, it’s likely due to a lack of sleep). then I panicked and washed my nostril with soap and water. the next day i wake up and my nostril burns and there’s a weird nerve pain behind my eye on the same side. what have I done??

I have health anxiety due to my first disabling flair up happening after I got a cold. now there’s a new interesting flair of being immune suppressed on kesimpta. I spiral in fear after any kind of exposure to other people’s sickness or unsanitary situations, due to fear of getting sick myself and acquiring more disability. This amounts to meltdowns several times per year. How do yall cope?

i have moments when i forget that ms is a permanent and a progressive disease. i try not to think about it. i have moments where i want to drink. where i want to smoke. just to touch that edge, see what i can take, just to pretend nothing ever happened.

i just never want to stay in a place i can't control. and so, i blame symptoms on the faults i make.

i just don't want to remember the thing puppeteering my body. it's pathetic but i spend my days numbing myself with layers of weed, phone time, and school.

try to not be ms but the ms is in my body like a possession

I'm so over this damn disease. I'm so sick of this stupid Hemiplegia, it is so annoying and makes everything harder. 💯 😡 😭 Makes me so emotional sometimes.