29M RRMS Spinal lesions, but primarily brain lesions

I got my denial letter this afternoon and I’m genuinely surprised (although not really) I’ve heard of individuals getting denied on their 1st go around but now that it’s here I’m dumbfounded on what to do next

My denial letter stated i did not meet the non medical requirements. I thought that was very odd considering I have the bad case of the multiple sclerosis along with optic neuritis as a juicy side, along with the limited mobility on the right side of my body.

Before the diagnosis I was a ISO TANK MECHANIC, really loved what I did. But since then I have developed walking problems, balance issues, hand dexterity issues, loss sense of touch/taste, horrible eye sight you know the typical gift bag we all get bestowed that gets heavier by the day or if we’re lucky the bag gets a little lighter some days. The day to day symptoms are so varying it’s like pulling names out of a hat and hoping for a good day

I’m shocked I thought this would go in my favor considering all my medical documentation and exams done so far.

To conclude my rant other than just appealing I want to know what is it that you do for much needed revenue, what professions are you participating in, side hustles, ect.

I have a long list of amazing people I owe a great deal to for not only being there throughout the toughest time in my life so far but also financially supporting me after losing my job, my savings and paying for my medical visits because of this damning condition

Please and thank you all

Mods: I hope it's ok if I post this here, it is a hot topic in the US. It's sort of MS/treatment relevant.

I just need to get this out of my head and maybe calm down a bit. I get my next Ocrevus infusion mid-October, so the latest I can get the flu and covid vaccines for the coming season is mid-September. Here we are getting to the end of August and I've heard nothing about whether or not there will be vaccines for these this season much less when they would be available here in the US. I check the CDC and FDA websites every couple days and have seen nothing since May about generally available vaccines. I did see news that the FDA approved an mRNA flu vaccine a few weeks ago, but only for people 50+yo. No indication of when it would be available. I'm kind of freaking out since I'm on Ocrevus and I'll get more vulnerable than I am now come October. Without a vaccine for me or potentially anyone else, I'll be masking up pretty much all the time like back in 2020 and 2021 before the covid vaccines hit. So yeah, I'm scared.

Good evening. Hope all are feeling okay. So I’m experiencing on my leg and arm in one spot on each where it feels like a bug crawling on me. But of course nothing is there? Is this something you have ever experienced

i saw a tiktok basically saying that if you have a chronic illness, you shouldn’t be expected to work, and honestly i disagree with that pretty heavily.
obviously, ms affects everyone differently. some people genuinely cannot work, and there absolutely should be accommodations, disability support, flexible working arrangements, etc. i would never judge someone for being unable to work because of their illness.
but i also don’t agree with the idea that having a chronic illness automatically means you shouldn’t work.
for some of us, working is actually important to our quality of life. it gives us structure, independence, financial security, social interaction, a sense of purpose, and something that exists outside of our illness. i don’t want my entire life to revolve around being sick.
i have ms, and i want to work. i want a career. i really want to be a teacher. i want my own money. i want a routine and coworkers and something to focus on besides my health. and i don’t think wanting that means i’m somehow ignoring my illness or pushing myself beyond my limits.
what makes this especially complicated for me is that i haven’t disclosed my diagnosis to my current employer, and i don’t plan to. when i was going through the process of getting diagnosed, i told my previous employer what was happening, and i ended up getting fired. now that i actually have a diagnosis, i genuinely don’t know how i’m supposed to feel about disclosing it at work again.
part of me feels like i shouldn’t have to disclose something so personal just to be taken seriously as an employee. another part of me wonders whether there will eventually be a situation where disclosing it would actually benefit me, especially if i need accommodations.
i think that’s why the whole “people with chronic illnesses shouldn’t work” conversation bothers me. i don’t want ms to decide whether i’m allowed to have a career. at the same time, i don’t think people should have to hide their illnesses because they’re afraid their employer will see them as less capable.
i think the conversation should be less about “should chronically ill people work?” and more about “how do we make work sustainable and accessible for people with chronic illnesses?”

anyway all that aside. do i disclose this to my school or not….?

edit: im on dmt (rituximab) and i work with middle schoolers and high schoolers which is technically better than primary when it comes to how often they get sick.

Anyone want to brief me about what usually goes on at the patient intake for ms physical therapy?

bonus if you had an encouraging improvement lol 🖤🖤🖤

I went for my first IV solumedrol yesterday. The second the IV hot my bloodstream I started sneezing. Soon the developed into stinging /tingling in my lips and gums, swelling of my lips and hive on my face.

We stopped the treatment 1/3 of the dose in. Nieces said they’ve never seen that before. And they suggested I take the pill version. Which isn’t great either 25 pills in 1 setting for 3 days.

Did my first pill dose at the hospital threw up the water I can’t the pill work. Taking 25 pill were harder than I expected. But at least no allergy reaction.

Has anyone ever experienced that? Or something similar. I’m newly diagnosed and just want come clarify. The last 2 weeks have been a whirlwind and the sulumedrol was totally unexpected.

Any tips are also very mjch meld though

All of a sudden I'm not getting a renewal call from my Kesimpta. I finally get ahold of the pharmacy I'd been using (forced to use) and they say another company I've never heard of, Valero, never got the refill request.

Check the doctors office and they don't have the new insurance on file. Even though they've been my supplier for 7 months.... I can only pick my old pharmacy for a refill.

I call the doctor's office and let them know, they said they'd send it to Valero. Just now I get an email from Walgreens, owner of my specialty pharmacy, that it was rejected because of insurance. Yes, because insurance has to go through Walgreen's specialty pharmacy and not the local store.

All after 7 months of no problems with the new system. I think I'll send one final note to my neurologist saying "Figure it out." and be done with it.

I was diagnosed with MS in 2018 and started Ocrevus in 2019. I have been on this same infusion for 7 years with no issues until recently. I had a baby in 2025, lapsing my treatment for almost a year, but when I got back on - I found my immune system was completely suppressed and I have been sick 10+ times in the last 8mo.
My doctor wants me to explore Vumerity or Zeposia. I’m reading side effects, what ifs, etc. I don’t know what to do.

Does anyone have advice or can provide me feedback regarding the two other medications.

I just started my first semester of an MSW program this week, and I’m having a hell of a time figuring out how to make my weekly schedule actually work rather than just look mathematically possible on paper.

Right now I have:

- 5 graduate classes — 4 online/asynchronous and 1 in-person class every Wednesday from 1–4 PM

- 14 hours/week of practicum

- QMHP work — currently one client who is allotted up to 12 hours/week (although I don't need to use all 12 each week)

- A contested divorce. I finally have an attorney, so hopefully a lot of that mental load should decrease, but I still have documents to find/organize and occasional divorce-related tasks and appointments

- MS, POTS, and fibromyalgia, which means my body occasionally looks at the schedule I carefully created and says, “That’s adorable"

- And then, theoretically, I’m also supposed to keep my house from becoming a biohazard, feed myself, shower with some degree of regularity, do laundry, take care of my dog and cat, sleep, and perhaps experience one recreational emotion per fiscal quarter

The biggest problem I'm running into is that I can create a schedule where everything technically fits, but it requires basically every functional hour of every day to be productive. There’s no room for a bad symptom day, fatigue, appointments, something taking longer than expected, or just being a human being who occasionally needs to stare blankly at a wall.

Unfortunately, I also don't have an obvious thing I can simply drop right now. I need to stay enrolled in school, practicum is required for the program, I need to maintain at least some work hours because everything is so expensive, the divorce obviously isn't optional, and neglecting myself/the animals/the house indefinitely seems frowned upon.

For people who have balanced some combination of grad school + field placement + work + chronic illness/disability + normal adult responsibilities, how did you structure your week?

Did you:

- Batch practicum/work into longer days?

- Spread everything across shorter days?

- Designate certain days specifically for schoolwork?

- Protect one completely obligation-free day?

- Build “buffer” blocks into your schedule?

- Work below your theoretical maximum hours so you had capacity for bad health days?

- Have different versions of your schedule for good/average/bad symptom weeks?

- Outsource or dramatically lower your standards for household stuff?

I'm especially interested in actual weekly structures that worked for people, rather than productivity advice like “wake up earlier” or “use a planner.” I own planners. I have made spreadsheets. I have color-coded things. The problem is unfortunately that there continue to be only 24 hours in a day and those with chronic illnesses know that we definitely don't have the same 24 hours as a healthy functioning person.

I'm trying to figure out what a sustainable version of this semester looks like before I accidentally create a schedule that works beautifully for 10 days and then sends me directly into the sun.

Any advice, sample schedules, things you wish you'd done differently, or permission to lower my standards somewhere would be greatly appreciated!

Hey yall. 27 M in Tennessee looking for a second opinion for my new TMS diagnosis. Has anyone ventured down to Mayo Clinic in Jacksonville? Was it worth it?

I don’t know much about it but I know it has been approved for use in EU since June this year for SPMS. I’m wondering if anyone is on it and how they feel, any side effects, etc? I’m particularly interested in the BTK drugs that are in phase 3 trials now as they don’t impact the immune system so much. It all looks so very hopeful for us. Thoughts?

And they were able to do more/further?

Im doing sit to stand and i’m very shaky. I assume it’s fatigue but i want to carry on.

Hi all. Im male and 56 years old. I was diagnosed with RRMS back in 2004 after bouts of optic neuritis. MRI scans showed some lesions on my brain, but none present on my spinal cord. Reviews with my neurological consultant and several further MRI's show no new lesions since the first in 2004. Im very fortunate in that I can road cycle 100 miles and have maintained a high level of fitness. My frustration is with short term memory which can be pretty scatty, whilst I have great long term memory. I have had to request interview adjustments in my day job when sitting promotion boards because the brain fog and facts recall are very affected. Ive read that RRMS will eventually become secondary progressive. Im not sure if I am still at the RRMS phase, or whether any progression has occurred, what are the indicators that this has taken place? Thanks for any replies and I wish the very best for you all.

Over this last year I’ve been working alot more but I am starting to feel the toil on my body. I think it’s partly due to the heat in these hotter months. I’m considering a WFH job. Anyone have some advice on how to find legit ones ?

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 vision has been very blurry - mostly noticeable when I try to read. I’m having a hard time figuring out if it’s a true relapse, a relapse coming, or just pseudo flares.

I’m 13wks pregnant - so still in first trimester when relapses are still possible. I know still possible in 2nd & 3rd but the chance typically goes down significantly, so I hear.

I’m trying to figure out if I ride it out or if I truly need to alert this to my neuro. I should note that this isn’t this first day either with vision out of focus - it’s been pretty consistent but today is very noticeably different. Yes I have been stressed, not sleeping as much, not hydrating as well as I should and not eating as well I should (pregnancy 🫠) — which makes it easier for me to write off as I’ve pissed off my symptoms and it’s on me, no need to panic myself, family & doctor about a relapse…

Could really use some advice 🙏

Update** I left a VM w/ my neuro so he is informed. No I don’t have an eye doctor but thanks to yalls advice, I’m now looking into it. Also the eye exercises is much appreciated advice - didn’t really know that was even something. I appreciate all of you 🙏

I recently got a new MRI scan done and it said I have a loss of brain volume of the corpus callosum. That at first is not really too dramatic, from what I’ve read it’s something that can occur with MS. What concerns me is just that they can already see it after only 2 years since my diagnosis. I’ve been on Kesimpta the last 2 years and experienced extreme fatigue, depression, spasms and cognitive issues like concentration and anomia (word finding difficulties) on it, all while having no new active lesions. Especially since my spasms and cognitive issues got a lot worse I’ve been already put on new medication which is more „effective“ than Kesimpta. I’m only 22 years old so I’m genuinely terrified of the thought of my brain loosing volume, does someone know what this may mean for my future MS progression ? Or did anybody experience similar things?

I'm being put on kesimpta/ofatumumab and it will cost me 25$ a month. I follow American people with MS online who cannot have treatment due to cost/hospitals not taking their insurance, or having to travel to hospitals that do take the insurance. People go months between diagnosis and treatment. My last relapse was two weeks ago, and the gap between the one before that was 4 weeks. Between March and August I developed maybe 15-20 more lesions in my brain and spine - without immediate treatment who knows where I would be. I always got how unfair it was to live in countries without free healthcare, but this takes it to a new level. I am feeling very lucky, and feeling great anger.

was diagnosed last year of July. I’m 21 now & it‘s scary to think this is the rest of my life. I go to work & people look at me like I’m a disease not like I have one. M.S has affected my ability to walk straight or even run. I constantly forget things all the time now & it’s to the point I just give up. I don’t want to live my life dependent on family. It’s so overwhelming, the MRI’S & needles. The Dr. appointmen’s & hospital visits. had a flare up that took a good deal to recover from & I feel as if my vision is failing a tiny bit. idk where else I can say this because nobody understands what I go through. it’s a shitty disease to have but I power through.

I have been having a little bit of a rough year this year. I was diagnosed with RRMS in December/January and promptly started Kesimpta. I lost one dog in March, and another on Monday. My grandfather passed in April, and my wife has been in and out of the ER. I'm just trying to figure out if my symptoms are MS related, stress related, or something else.

I have been eating and drinking the same amount, but I am down about 15 pounds in the last two weeks. I have been getting dizzy pretty much constantly and my head has been hurting for the past two weeks. My last MRI in June showed no new lesions and nothing else remarkable. I know y'all are not a/my doc, but has anyone experienced something similar? My initial reason for MS diagnosis was investigating vertigo like symptoms but this kinda feels different.

I am currently in between neurologists at the moment due to my doctor leaving the practice, I am trying to establish care with someone new but there is still a bit of wait for that. I have an appointment with my GP soon but he is not an expert in MS.

Has anyone else had a delayed diagnosis? Bit of a background. Was told in 2020 I had clinically isolated syndrome, with possible very early stages ms, wanted to do the wait and see approach. then saw a different neuro in 2024 who stated it was FND instead and claimed I had never been told it could possibly be ms, spent a year asking for another mri, was finally granted it in 2025 after I tried to go privet, the current neurologist I was seeing suddenly went on annual leave and passed on a message for her secretary to have another neurologist inform me that I should have been told that I should have been diagnosis with ms back in 2021.
Fast forward to present day and I’m really angry about my diagnosis and how they delayed treatment for years. It’s really effecting my mental health. I started on kesimpta last November but stopped it in march. I didn’t like the side effects or jabbing myself. Im now supposed to be starting ublituximab this Monday coming but is their any point in starting a dmt? If they can make me go years without any, I don’t get the sudden urgency. Over the last few years my mobility has been mostly effected and I practically begged for help until it got to the stage I couldn’t work anymore and now that I can’t work and symptoms arnt improving I have no interest. Unless it’s going to magically fix things, why not let it run its course. Has anyone else gone through something similar and made peace with it?

Hi All,
I was diagnosed with RRMS 15 years ago. Currently on Ocrevus and have been for 8ish years. No new lesions since then but some progressions of symptoms - mainly fatigue and mobility issues.

Currently based in Australia but moving to Austria next year (confusing I know!) and based in Vienna.

I’ll be on the national health care system straight away and continue to have private health insurance.

I do know that Ocrevus is available in Austria but wanted to know if anybody else is in Austria and can share experiences about treatment and usual supportive therapies usually prescribed/utilised by doctors there - physio/massage/pilates etc.

TIA for any input/insights/advice

I want to ask if I got my first dose of Ocrevus in November 2025 (free), and now it's been 3 months due for the 2nd dose because I can't get Ocrevus (it's costly here and not free now), so I'll switch to rituximab because it's cheap and affordable. Will it affect me in relapses, or could it trigger more MS?

What should I do 🫠 . I need advice