Multiple Sclerosis Blog

23M, needed a place to yap, mainly about my remitting-relapsing multiple sclerosis, but also my other health issues lol

[mssy-lad]

just clocked i don't have an intro post, and that it could be a helpful addition to my blog haha

🧠the tumblr basics🧠

i'm 23, i live in the UK. i'm a polyamorous gay man, i'm mixed race (white asian) and was adopted when i was 7. i'm disabled. i can't think of any more tumblr based basic info to provide, but feel free to shoot me an ask, idk, i just always see blog intros start with a list of things

🧠blog basics🧠

this blog is basically my dumping ground for health related woes, information, memes, etc. it started as just for MS, but i've been focusing on my tism and improving my quality of life through that lens too, so that's popping up more now

health wise, i'm chock full of issues, details will slowly emerge as i post but tldr:

🧠physical health issues🧠

remitting-relapsing multiple sclerosis (diagnosed december 2024) - i'm on tysabri, have been since april 2025

lactose intolerance (the kind where i can no longer say it's worth it)

IBS

bulging cervical spine discs

low blood pressure

🧠MS symptoms🧠

double vision - i have prisms in my glasses to handle this

neuropathic pain (numbness, tingling, dull ache, stabbing sensations, pins & needles, weird ice cold sensations) - i'm on gabapentin but i'm in the middle of a dose increase and the pain keeps getting worse rip

weak swallowing muscles - i forget which muscles it is but sometimes food says "fuck you" and tries to go up my nose when i swallow or just kinda chills out in my throat. i'm seeing a speech and language therapist to try and manage this

stiff muscles / spasms / spasticity - i'm seeing a physio about this, but it's still getting worse and it sucks. my right knee's all stiff and it's messed up my walking, which has put pressure on a bunch of joints and also fucked up my back, so now i have back pain rip. and my shoulder muscles on my right side are like ?? constantly flexing?? so i'm like a fucked up little ball of pain

bladder issues - idk what the right words are cuz i've only been referred to the continence team and STILL haven’t seen them (it’s been 8 months rip) but my bladder just won't let me piss and constantly screams at me that it’s gonna bust. it's very annoying.

memory, but specifically with words - i mostly cope by doing charades and offering what i can remember about the word i'm trying to say. first letter, similar words, associated concepts or things, shit like that. my partner gets me so it’s chill.

seeing stars (that’s maybe my BP lol), getting vertigo, dizziness, feeling like the room is spinning, feeling like i’m swaying / on a boat

neuropathic pain but it’s not pain, just ?? idk if there’s a term for neuropathic ~sensations~ but it’ll feel like my fingers are lifting or my legs are flying away, when they are not. my brain’s just like “heyo your arm is in the air” and i look and my arm is chilling where i left it.

[mssy-lad]

found my niche as a writer

i always wanted to a writer when i grew up, but always struggled with motivation

welp, today i wrote a fuck ton dhfjhse - all for my disability claim lmaoo

[mssy-lad]

my partner: you're tired... you should sleep

me: nooo i'm fine

my partner: babe, check the mirror

[my left eye lid, barely open, something that only happens when i'm tired vs me, desperately trying to open my snitching eye]

[mssy-lad]

im having a DAY

i got BV *again*, second time in my life - it's only become an issue since i started Tysabri in April, and i meet literally none of the risk categories for it smh

it's also my third bacterial infection - i had H Pylori about three months ago. all three of the bacterial infections i've ever had have been since April, since starting Tysabri.

i know being on DMTs is super important and my MS is super fucking aggressive and attacking really important bits of my CNS, but like ??? ughghghhghg. clearly the bad bacteria in my body wants to reign supreme now that my immune system's fucked off

the cherry on top is that my MRI results for my neck issues came back, and i have bulging discs. i am 23. i have to live with this neck for another 50 years or so, and it's already clocking out rip

until i was 21 i had almost zero health issues. i'm pissed.

[chronicillnesshumor-deactivated]

[miinobobeano]

It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.

I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.

[fibromyalgicaf]

Hey if you have chronic pain, you gotta remember that the cognitive load of dealing with that is exhausting. Just that alone. Never mind what else you've got going on.

You're not lazy or being dramatic; you're overloaded.

[mssy-lad]

aaa i was diagnosed with MS 1 year ago 😵‍💫 do i celebrate??

[mssy-lad]

hnnnnrgh my barely noticeable ptosis (droopy eyelid) has suddenly become more noticeable

[kelpology]

being disabled will really have you thinking/saying things like “yeah i’m not really THAT disabled. as long as i take my meds twice a day (and as needed), eat and drink exactly the right things, keep the perfect balance of being active and resting, the weather is stable, and nothing unexpected happens AT ALL… i’m totally FINE! i probably should not even call myself disabled at this point because i’m doing so well!”

if you don’t want to call yourself disabled, that’s fine and it is your choice! but if you’re only “fine” or “doing really well” when a bunch of different variables are all lined up perfectly, then maybe you are not fine actually. just a thought!

[boccher]

doctor will fix me they'll do a scan and find a terrible darkness seated in my stomach and be like "oh my god we're so sorry we were supposed to remove this at birth like everyone else, i don't know how this was missed, we're so sorry you've been living like this your whole life" and it'll fix my brain too and all clouds will part

[mssy-lad]

ughghhhhhh i thought ibs symptoms were bad, turns out i had h pylori for god knows how long, only found it out cuz i called my doc about how i’d started having acid reflux and how my ass was getting worse

post treatment and my acid reflux is worse, my ass is worse still, and i have to have a camera rammed down my throat to figure out wtf is going on

[wipeoutms]

This is a great video it explains what many people think about MS, and they are wrong.

I've been asked to stay away from some people because they think multiple sclerosis was contagious.

I've also been told that I can't have multiple sclerosis since I'm not in a wheelchair.

This is just some of the myths that people believe.

[mssy-lad]

aaaaaAaaaa it turns out i don’t have IBS, i’ve been riddled with H Pylori for like ??? a year??????

tldr but in january i went to the GP and said “hey i think i have IBS. i’ve had these symptoms for 6 months.”

and the lady i saw was like “ok, make a food journal for 6 weeks and don’t eat things that hurt. come back if you can’t manage it”

and i was like “ok sweet”

tHen like 3 months ago i started getting really bad acid reflux and was having much more extreme IBS symptoms when accidentally ingesting literally the tiniest amount of oil or fat or onion or anything, and the buscopan wasn’t really working anymore

i figured i must just be really shit at managing IBS, and missing some triggers. but i felt super sick allll the time and was violently bleaching 24/7 and everything hurt and smelt bad

so i finally called my GP 2 weeks ago and went “HELP” and my favourite most lovely doctor that works there was available for an appointment. she’s the one who’s helping me figure out my wrist, hand, and elbow pain and has referred me to get re-tested for carpal tunnel & to see the orthopaedic triage team thank god

she was like “hey man give me your shit cuz we need to rule out other causes”

i did that. it was……. i need another post to explain the stool sample. it was funny and awful.

either way she got my poop the next day in a lil tube and literally less than a week later i get a call back saying “hey!!! your results came back!!! uhhhhhhhhhhh. you are full of bacteria and at risk of getting stomach ulcers!!! pls go collect two antibiotics and PPIs tonight!!!”

tldr i am now taking two antibiotics and medicine to reduce the amount of acid in my tummy. and in like a week i should be fixed????

edit / update: turns out most of my symptoms were caused by IBS, the h pylori was just an extra thing rip

[queer-as-city-folk]

𓆝 𓆟 𓆞 𓆝 𓆟𓆝 𓆟 𓆞 𓆝 𓆟𓆝 𓆟 𓆞

Fishies to make it all hurt less

[wilderbutch-deactivated20250413]

ㅤㅤㅤㅤㅤㅤㅤㅤㅤ𓍊𓋼𖡼𖤣𖥧𓆏𖡼𖤣𖥧𓋼𓍊ㅤㅤㅤㅤㅤㅤㅤㅤㅤ𓍊𓋼𖡼𖤣𖥧𓆏𖡼𖤣𖥧𓋼𓍊ㅤㅤㅤㅤㅤㅤㅤㅤㅤ𓍊𓋼𖡼𖤣𖥧𓆏𖡼𖤣𖥧𓋼𓍊

Froggies to make it all hurt less

[mountaincripple]

you have got to kill the abled version of you that lives inside your head and makes you feel like dogshit and i’m not joking.

[mssy-lad]

i broke a plate for the first time since i was a little kid. i clocked i was having more issues with the co-ordination required to dry dishes, but fuckk me.

the thing slipped out of my hands after i'd dried it, and in an attempt to catch it i slapped it into a kitchen cupboard. the handle broke. the plate did not. then it hit the ground and ceramic was everywhere.

it was one of my favourite plates :(