#tysabri

basically, i’ve tested positive for the JC Virus antibodies and i’m on tysabri. that means my risk of developing PML is 1:10,000, since i tested before 0.9

(at 24 - 36 months, it’ll be 1:5000. at 48 months, it’ll be a 1:2500 risk)

now. i was handed a big ass leaflet about wtf this was when i started tysabri, when i hadn’t got the JC virus antibodies.

standard procedure (even if i didn’t have the antibodies) is to monitor my levels of antibodies every 6 months, keep me and people close to me aware of PML symptoms, and do an MRI once a year (my next one is in april). then, come 24 months, stop tysabri and switch to ocrevus (which is what i was gonna go on if i tested positive for jc virus off the bat)

so. about 2 months ago i got a text from my GP saying “can u call us about a letter ur neuro sent us”, and i had no clue wtf it was referencing but obvs booked in for a phone call appt (which i had today). about a month ago i got a letter from my neuro telling me about my JC virus test results.

according to the GP i spoke to on the phone, if i were to test 0.9, i’d actively have PML 🤦‍♂️ and that because my test result was pretty close, i might already have it. babes if i had it for the last two months we’d fucking know, i wouldn’t be talking to you on the phone and i might be dead 😅

she asked me about whether i have any of the symptoms related to PML, like balance issues or vision changes. obviously my answer was YES because i have MS, and those are my symptoms of MS - i reassured her that there had been no sudden / uninvestigated changes, but i s2g i heard the GP’s heart drop 💀

anyway, she let me know that because of this i’ll be having an MRI in april to look for PML (no, it’s been booked in for a year, it’s standard, if i was showing signs of PML they’d get me in ASAP)

and that *now* i’d be getting blood tests every 6 months to check the levels of antibodies in my blood (they do that anyway so that people who were negative and become positive get caught, how does she think they found out i’m now positive)

and that i wouldn’t be getting 4 weekly injections, it will change (no it won’t 😭)

anyway. was telling my partner all of this and basically saying how it’s kinda sweet that the GPs are trying, and they care, even though they don’t know wtf is going on, but it’d be nice if they googled it. my partner said it sounds like they did, and read a shitty AI summary.

then i remembered that time i watched a GP google a medical issue i was having and quote, from the ai summary, misinformation about medical transition at me. and how it took me 3 months to get healthcare for that issue (i went private) even after i’d got the gender clinic to write my GP a letter that professionally called them fuckwits

i originally wanted to go on ocrevus cuz i'd be able to just take a few days off twice a year, but cuz of my MRI results right before i was due to start, my neuro and nurse begged me to go on tysabri (and obvs i said yes, if it's gonna be the best option, i'll take it)

fuckkkkkkkkkkkkkkkkkkkkkkk me, it's brutal

my local hospital doesn't have a proper neuro department smh, so i've got to travel 8.5 miles by bus to even get there. thankfully it's a direct bus, so it's only £3, but i get a bit travel sick so it sucks

they gotta take blood (for the first 6 injections) and that sucks. i'm not scared of needles but whenever i get my blood taken i go super light headed and it's just generally pretty uncomfortable. and the nurses doing my bloods are always like "with that many tattoos, why are you scared?" - for some reason they all think that passing out = fear, which like ?? it doesn't matter, but it's a bit annoying.

why does the injection feel like someone's fucking my stomach with a laser? my god. it burns so bad.

sitting in the waiting room and it's me (a 22 year old guy) and a then just a million grandmas. they're chill, but i feel so out of place.

wHY do they do it in TWO injections??? it sucks enough to have literal HELLFIRE injected once, sO WHYTHEY GOTTA DO ANOTHER ONE RIGHT AFTER??????? WHY NOT JUST DO ALL OF THE TYSABRI IN ONE BIG HORRIBLE INJECTION, INSTEAD OF TWO MEDIUM HORRIBLE INJECTIONS?? AAAAA

if they do the injection super slowly it hurts less. but it's terrifying to breathe cuz i'm scared my stomach will move and it'll hurt more or the needle will wiggle around inside of me. and it still hurts, so overall i think the speedy but more painful way is better??

the newbie doctors who do my blood pressure always go like "oo, so what's this injection for?" and i tell them it's MS and they go all "awhhh nooooo" and look at me like i'm a sick dog. it was fine at first but i'm already sick of it lmao

waiting for an hour afterwards. that sucks. i can't wait for my 7th injection when i get to just yeet myself out the hospital as soon as possible

getting the bus home. tired, feeling a bit sick, and then getting travel sick on top of that.

aaaaaaaaaaaaa dizziness when i lie down. i get dizziness in the evenings anyway but ESPECIALLY after my injections. i just wanna lie down and instead i get the feeling that i'm falling and the room is spinning, so i gotta sit upright and it's just ugh

Which isn’t a lot, but I fucking HATE that it’s happened twice.

I hate infusions and I have a steadily-growing list of infusion nurses that I hate also. I hate that infusions cost what they cost. Whoever decided that they should cost that much should have terrible things done to them with a cheese grater.

1.) I got pizza as a reward. Because I can’t fucking cope with not getting a treat afterwards because I’m like, 12.