r/MultipleSclerosis

This seems silly but I'm working on getting more comfortable using my cane in public. I'm also trying to go to the gym more so I can be as strong as possible. Once I'm on equipment or at the weight machines I'm fine. Do I just lean my cane against the wall while I work out? I can walk without a cane but it does help me feel more steady and safe. I just feel like people are going to judge me for using a cane AND working out. I think I'm judging myself probably. Just interested in how you all deal I guess

New symptom that just came up 1 week ago and has me worried. I’ve been diagnosed with RRMS for 14 years. Mostly mild with optic neuritis. I have the typical fatigue, cog fog, heat sensitivity.

Almost a month ago I had shingles. Again, mild - I think because I’ve had the vaccines. Mostly just really itchy. I took the 1 week of Valtrex as prescribed.

Fast forward to what started a week ago. I have places on my skin where I feel like I’m chafed or sunburned, but I’m definitely not. My back and forearms feel this way. These aren’t the places where I had shingles. Well, the back is close proximity. I just don’t know if it’s still shingles or if shingles has sent me into an MS relapse. Don’t know what to do and really don’t want to take another medication!!! Has anyone else experienced anything similar???

i have ms and an official diagnosis. I have multiple lesions in multiple places including my front cortex and periventricular. While i have been getting used to life with varying daily symptoms (never have a symptom free day) these are mostly the physical i have noticed that my mood fluctuates wildly and i find it really hard to find balance. i go from rage to sobbing and everything in between and its uncomfortable to experience especially as afterwards i realise i was sounding and acting unreasonably some of the time. If you have this what do you do to manage it? I know i swing through my emotions and i feel sorry for my husband and family but i just cant control it and it is impacting on my confidence socialising.

So I have 20 lesions on my brain 🧠 and I'm in treatment with ocrevus zunovo. I have had ms for 6 years, I did suffer from fatigue occasionally. But not on a daily basis. I have mental health issues and I'm having symptoms from that, but it's unrelated to MS. Isn't it strange I dont have any symptoms?

I’m 23 and I was diagnosed in 2023. For the most part, I’ve been able to almost ignore the symptoms that’s how minor they’ve been. Except today. I’ve been bawling for the last hour and I can’t stop because I can’t believe this is going to be my life and I really don’t think it’s going to get better.

I just made dinner and I knew I wasn’t feeling the best so I decided to keep it small. Rice and eggs one of my favourites. I wasn’t even standing for that long and now my legs feel like I just ran a marathon. I hate this so much. I’m still so young but I feel like I can’t do anything without being in such debilitating pain. I have no one. I have no friends. My family is too busy to deal with me. I feel so alone all the time and I don’t know what to do anymore. The only thing keeping me going and the only one to comfort me when I’m going through these moments is my dog, he’s good at giving hugs. Sorry for the depressing ass rant I’m just so tired

Hey everyone,

I’m writing this because I’m 30 years old and I have relapsing-remitting MS. I’m posting because I feel like I’m at a point where I’m having to start my whole life over, and honestly, I’m lost.

The hardest part isn’t just the MS itself. It’s the fatigue, the pain, the brain fog, the uncertainty, and trying to figure out how I’m supposed to survive financially while my body doesn’t cooperate the way it used to. I’m trying not to use MS as an excuse, but some days it genuinely hurts to move and the fatigue makes even basic things feel impossible. I just had to fight with my neurologist for a prescription for armodafinil.

I don’t really have family support, so I feel like I’m trying to navigate all of this alone. I don’t have savings anymore, and I’m trying to figure out how to re-enter the workforce in a way that I can actually sustain. I’ve asked my neurologist for a referral to vocational rehabilitation, because I do want to work if I can. I just don’t know what kind of work makes sense anymore or how to rebuild without crashing.

I’m also dealing with what may be disability discrimination from a previous job, and I have an interview coming up with the EEOC. I don’t know if I should also talk to an employment attorney, or if I should wait and see what happens with the EEOC process.

I guess I’m asking for advice from people who have been through this part of MS life:

How did you rebuild after diagnosis or after losing your job?
Did vocational rehab actually help you?
How did you figure out whether to keep trying to work, apply for SSDI, or do both?
Did anyone talk to an attorney about workplace discrimination or accommodations?
What kind of jobs have worked for you with MS fatigue?

I’m not looking for pity. I’m just tired, scared, and trying to make the next right move. I want to have a future. I want to work if I can. I want to take care of myself and my dogs. I just don’t know what the path is supposed to look like right now.

Any advice, experience, or even just “I’ve been there and this is how I survived” would mean a lot. Some days I feel like I’m grieving the version of myself I thought I was going to be. I’m trying to believe there’s still a life for me on the other side of this, but right now I feel like I’m standing in the middle of the wreckage trying to figure out what to pick up first.

Thank you.

I’ve been taking Ocrevus for almost 3 years now, and I’d like to know what effects it has on you. I’ve been noting my symptoms after each dose. Leg pain, emotional fluctuations, and trouble concentrating—especially forgetfulness—are common in the first week. There’s also this very strange situation where I feel extremely happy one moment and extremely irritable the next. It’s as if I’m a different person before and after taking the medication. As time goes on, my mental fog clears, and I’m able to think more clearly. Also, after every dose, my interest in music and musical instruments increases, and I play an instrument. Do you experience these effects as well?

I can't believe today is my last day being 33. Wow how time flies!! 😯

Tomorrow is my 34th Birthday 🥳🎉

Goodbye 33 and Hello 34 👋🏼👋🏼

Im on Ocrevus and when i was first diagnosed they assured me my care team would be on top on the scheduling but that hasnt been the case. Im really trying to do everything ahead of time to make sure my medication is on time.

I usually contact my care team to say “hey, just making sure everythings good with my infusion to be scheduled!” and i usually get a “we are starting the process and the infusion center will reach out once we are ready to schedule”

I did 2 weeks in advance the last time and had to stay on top of it only to have to call the infusion center myself and they told me they had a new system and that was the issue, fine, that’s reasonable.

THIS time, i contacted my care team a little more than a month in advance
(im due in a week if we’re going by exactly 6 months)
I got, “we are processing it ..”etc.
during this time i renewed insurance and my ID stayed the same and ive had other apts outside the infusion since then.
i called the insurance for other apts but everytime i did they assured me there was nothing processing for authorization so i started to get annoyed and finally contacted my insurance and asked specifically about the infusion and they said that it wasnt processsing because i actually have it already pre approved up until October. ummmm okay…..
So i reach out to my care team and im like….insurance says theyre already approved and now my team responds and says its saying my coverage ended and requesting my cards info.
Granted i didnt think to check to see if my Group ID or Rx changed on the card so im partially at fault but im frustrated because it feels like i always end up doing all the legwork to figure it out. i guess i want advice but also validation if anyone else deals with this. cuz i always end up panicking about my infusion being late.

Had MS for 16 years

Been on ocrevus just over a year

The last 6 months I thought I was dealing with anxiety and depression, but iv been in and out of hospital multiple times in last few weeks

3 new lesions

I just feel like death and this has compounded my depression and anxiety massively or was the cause of my depression which no antidepressants are touching

I think im getting another relapse too as my stress is so high.. I have tremors and vibrating in my hand and stomach feel maybe have Parkinson's too as I read the symptoms im only 40 yr old. I have appointment with neurologist tommorow

The fatigue has increased to another level I cant function

Im so low I cant see any hope or a future only thoughts in my head is my life is not livable like im on verge of something bad happening, I know probably anxiety talking

Nothing seems real anymore my cognitive functions are so low

Im in so much pain everyday, mentally, physically and im crushed by fatigue and brain fog. I dont feel in control of my body or mind anymore.

Received my (26F) diagnosis last week and my doctor would like me to go on Kesimpta (this is also the medication I would like to go on) and naturally, Medicaid just denied my prior authorization. While I knew this was likely going to happen, I am just feeling incredibly defeated at the moment and worried that I will have to go through "step therapy", which we all know is simply not good medicine at this point. I have already messaged my doctor's office to ask them to fight Medicaid's decision and expressed that I really would prefer to avoid lower efficacy drugs at all costs. I also looked into Novartis's patient assistance programs but since I am on government insurance it doesn't appear I qualify for any of them.

This is mainly a vent, but I would love any and all advice for some other next steps I can take. This diagnosis is very new for me and I am still trying to navigate treatments and such. Thank you all!

Since the middle of 2024, I've suffered neuropathy in my feet; I long suspected that it began as a result of being off my infusions and that getting back on the treatment would resolve the nerve pain. Sadly, after getting back on the Ocrevus, the problem didn't go away.

Even before getting back on Ocrevus, I was on gabapentin. I wasn't happy with the results, so I switched to pregabalin, which has been nice, since I also have anxiety. I've also been using capsaicin cream for the past two weeks, but it hasn't been as effective as I'd like, even applying it three times a day

Moreover, the neuropathic pain is even more severe when the cream wears off, and applying over and over throughout the day is tiring.

That all being said, for those of you with neuropathy, what do you use for it?

And is your given treatment regimen enough to completely eliminate the pain, or does it only lessen it?

Hi,

My wife had last september problems with i guess doc said optc neuritis and balance. And we found out she has MS and they found 30 lesions on brain (she is 29). We started Kesimpta and these first 2 months is problem when she take shot, for a few days - head hurts, lower back pain and gut problem, but after that it' s ok.

Is 30 lesions a lot?

sometime during the month she has problems with balance and vision which she described is happening druing hormonal cycle, is that normal?

also sometime she is feeling weird on left side of body?

just figuring out what to do, mediterian diet, no diary products, from suplements d3,b9,b12,magnes, zync, omega, ubiquinol, sometimes lyisin, going to gym 2 time a week, walking 5km days between. No alch, no cigarettes. Working office job and going there by car. Anything more can you reccomend?

ty in advance!

Feet went numb last year, neuro doc said it was neuropathy tied to drinking.

Several months later no change after i stopped drinking, went to new doc and he ordered MRI. MRI comes in and said you have lesions in your brain.

Pants were shat.

MS specialist says “fairly mild” case but i have a few lesions in brain and one spine.

Thoughts

-kinda scared…started on Ocrevus makes me itchy.

- worried lower immunity means ill get sick a lot. Really bummed about it

- doc said i should get feeling back in legs, i didn’t think that would happen well see.

- i know my case isn’t as bad as some here but I love the community for sharing stories. Thank you

-I wish you all the best of luck.

Does anyone else with MS experience anxiety and shortness of breath almost daily?

Lately I’ve been dealing with a constant feeling of anxiety along with shortness of breath/tight chest sensations, and I’m trying to figure out if this is something others with MS experience too.

Some days it feels physical, some days it feels more anxiety-related, and sometimes it’s hard to tell which comes first.

If you deal with this, what has helped you manage or relieve it?

I decided to reach out to an old professor of mine (who taught me before my diagnosis), who specializes in sexuality and disability. He specifically has worked with people with disabilities (including MS), on bettering their sexual health and sexuality for years. He’s a researcher and overall a great guy with tons of empathy.

He’s agreed to meet with me to chat a bit about resources, but I’m wondering if anyone has anything specifically (related to sexuality) that I could ask for or something that might be helpful? I’m happy to share back to the group if anyone would find it helpful.

I want to start out by saying I’m glad I got the procedure because without it I wouldn’t have been approved to start treatments. Just wondering if anyone has had a similar experience with a tap or if I was an outlier.

I had a spinal tap three weeks ago and I’m finally feeling better enough to try to understand what happened during the procedure.

I was very very nervous, leading up to the procedure and communicated this with the staff and nurse practitioners. I also shared that I have a lower back injury (L4-L5) and low pain tolerance. I asked my doctor for anxiety meds, which I started the night before. I took 5mg of diazepam an hour before and another 5mg about 40 minutes before the procedure. I mostly read positive LP stories on Reddit and was also told by my doctor and the staff doing the procedure that I would feel a pinch from the numbing injection and nothing but pressure after. It was xray guided so I went in with that expectation.

They asked me to lay on my side. Gave me the numbing injection, which felt very sharp but it was brief. The nurse practitioner then said “you shouldn’t feel anything after this”. I immediately felt the LP needle and told them I felt something sharp. I could have asked for more numbing but it was so painful i couldn’t think straight. I thought they would give me another numbing injection, but nope they told me to breathe and kept pushing the needle in. It was an excruciating sharp pain and I cried and screamed for what felt like way too long until she said “we’re collecting the fluid now”. Then I felt pressure (like cramps) and that felt like a huge relief. When she took the needle out, the pain was sharp and intense again.

When the procedure ended, the nurse’s assistant had the nerve to ask if the procedure was better or worse than I thought it would be. She was in the room the whole time.

My recovery was brutal. No headache but my back pain was so severe, I didn’t sleep that night, was close to passing out from the pain. I considered going to the ER but I was so freaked out from the lp that I was worried about any other treatments. I waited 24 hours and then started taking Advil and muscle relaxers. After three weeks, I’m finally able to move more and have little pain at the injection site.

I was once told "wow, you know a lot about insurance" by a health insurance representative.

23m, England, highly active remitting-relapsing MS. thanks to an admin error, i had an MRI weeks before starting tysabri that showed 5+ new lesions since my diagnosis (like 3 months before i started treatment)

along with that miserable info, my 12 month follow up MRI has come back with multiple new lesions (i wasn't given a number). i haven't had a single "good" month while on tysabri (though found tysabri itself fine - no side effects or anything beside a handful of bacterial infections) and have had relapses while on tysabri (at the time i was told they were unlikely to be relapses cuz i'm on tysabri, now it's clear they were relapses). based on how i feel at the moment, i'm pretty sure i'm in the midst of an attack right now lmao

sooo, not great news.

my case is apparently being discussed in a couple days, and my MS nurse mentioned x3 potential options.

1. continuing tysabri for another 6 months, then doing another MRI, just to check whether new lesions are a recent thing or from early on in my treatment. she implied this was unlikely to be an option by immediately mentioning how i haven't had a good month since starting rip, and the fact that my pre-tysabri MRI was done barely 2 weeks before i started treatment, so the new lesions likely occured while on treatment. the lesions also can't really be brushed away as happening right at the start of my treatment considering i've developed new and worsening symptoms in the last 3 months.

2. switching to ocrevus for a year to see how i do on that. i was gonna switch to it eventually anyway cuz i became JC positive somewhere in between doses 1 and 6 of my tysabri. the nurse gave no indication of how likely this option is. tbh, i'm not thrilled by the idea of waiting another year to see how i do, cuz of how much shit can happen in a year. i don't want to go through "ooh it's probably not a relapse, maybe you're just ill" for 12 more months and find out i've got even more damage rip. i originally was gonna go on ocrevus before the admin error showed how active my MS was and my neuro convinced me to go on tysabri instead (apparently it's a tiny bit more effective??)

3. HSCT drugs. i meet all the qualifying categories, and prior to starting treatment i'd had more than 2 relapses within 12 months. i'm scared shitless of this option, but it also seems to be insanely effective in cases like my own ?

my MS nurse said she'll call me before my next tysabri jabs with more information and to tell me what is decided as the best option for me, but i'm already going insane with having to wait and it's literally been like 8 hours lmao

has anyone else been in this situation?? what did they decide for you? what's HSCT on the NHS like?? it sounds absolutely brutal

I've had MS for about 6 years, diagnosed on my 18th birthday after a blackout at work. I took it easy, everyone around me panicked, but what can I do, right? Just have to proceed with life!

I slowly started losing my hobbies and interests due to this insane fatigue and brain fog. There were days or weeks of just feeling like a spectator to life. I would sit on the couch, no phone, TV, any stimulation, just sitting there trying to think of anything. By the time something snaps me out of it, its been hours. I've scared my partner with this kind of thing, he was purely convinced its like absence-seizures. Its not, I just cease to exist mentally for no reason.

I was diagnosed with Bipolar 2 when I was 16, and those episodes were there during my down-months, and during mania, I would be insanely productive, happy, and social! My neurologist believes I've had MS in my early teens, given my history of blackouts, back pain, and these episodes of blankness. He believes my mental state was determined by MS, rather than being bipolar and I wish he never said that.

I have been in this episode now for almost a year. In that time, I got a new house, my lifetime cat partner passed, I got a kitten and puppy, and I have ignored my semi-successful Youtube channel for over 5 months. All of that feels like it happened last week. I try so hard to push myself to do things and "get back to normal", and silently wishing for mania to come and "save" me. Now I think my neurologist was right, and given my last MRI had some significant new lesions, I'm scared that I'm gone and that this state of mind, this "episode", is now permanent.

I do maybe 3 things a day before I clock out. I feed my pets, clean their areas, and hang out with my puppy outside for an hour for play/training. Then I come inside and... Poof. I'm gone until bedtime. I sometimes sit and "think" for so long, that I hallucinate doing things around the house that I don't actually do, almost like my brain is creating some kind of coping mechanism to convince me that I am productive in some way. Those ones scare me, because sometimes I truly get confused on why theres dishes in the sink when I swear I did them 2 hours ago.

I think I'm posting here because I truly do feel alone on this specific problem. I've scoured this subreddit for the past couple days and its crazy to me how we are all suffering and coping in our own ways with such an unpredictable disease. If you guys have any advice on brain fog, productivity, or just want to input your own experience, I would love to read it. I think I'm just a bit lost on what to do. Thanks!