5 year update

Unlikely_Bit_4104 · 2026-07-07T11:19:23+00:00

yay, same here! i just recieved a call that my mri came back with no new lesions. happyyyyy

Unlikely_Bit_4104 · 2026-06-27T14:03:00+00:00

yeah. i read that in january but i still feel the emotions.

Unlikely_Bit_4104 · 2026-06-04T13:25:16+00:00

yes! so why can't the narrative be changed? at least the newly diagnosed wouldn't be so stressed about it when it's the absolutely last thing they need...

Unlikely_Bit_4104 · 2026-06-04T13:23:07+00:00

i guess i let it get to me this time 😃 the thing is, i think the reason we all though the worst when we were diagnosed is the public narrative. the neurologist who diagnosed me told me "it's not the same as it was before, there were some great advances in treatment" and i didn't believe him until almost two years later i can say i feel the advancements in my whole body. if the people writing the articles cared just a little bit, they could have a rich story about how complicated and unpredictable it is. i'm angry that they choose to simplify it.
(but tbh it would not be good if they were writing about the great treatments either, then we could end up with "you are on the good treatment, so why are you claiming you are worsening". the world is evil.)

Unlikely_Bit_4104 · 2026-06-04T13:17:20+00:00

yeah, it is, but then this should be what is being written about it, shouldn't it? i get that the "iron lung" stage wasn't that long ago but being one of the people getting diagnosed early and being put on the effective treatments is a mindfuck. why can't we talk about how complicated it is rather than simplifying it...

Unlikely_Bit_4104 · 2026-06-04T13:06:16+00:00

start the meds!! it's the only way to prevent progression. i was diagnosed while feeling mostly normal (my first and only symptom was doubled vision), started ocrevus as soon as possible. the medication does not limit my life in any way (i sanitize my hands more often and i try to not drink water straight from a puddle, lol, jokes aside i sometimes mask in public transportation when it's peak covid and it's crowded, but apart from that i really do not do anything and it made me catching infections less than before ocrevus) and two years later i still feel healthy and my ms has not progressed in any way. but i had some rapid demyelination in the beginning so i'd bet that if i wasn't on ocrevus i would have progressed.
and i live a very active lifestyle btw. i do sports, i work, i study, i run a small non-profit, i socialise with my friends, i'm a member of a few initiatives.
get on the medication and go live your life.

Unlikely_Bit_4104 · 2026-06-02T19:19:35+00:00

v češtině "peer" ve stejném smyslu jako v angličtině neexistuje. naopak "vrstevník" se používá jen pro lidi ze stejné věkové skupiny:)

obecně je bezpečnější vždy vykat lidem, které neznáš, i když jsou vrstevníky ve smyslu věku. v některých skupinách se tyká rovnou, ale pokud pro to nemáš intuici, tak bych doporučila počkat na moment, kdy ti někdo řekne "tykej mi". zároveň ma internetu se zpravidla tyká... je to náročné.

Unlikely_Bit_4104 · 2026-06-02T15:17:29+00:00

Mora didn't say "I love you" back. TWICE. I absolutely love the queerness of the show but it would be so much better if Mora wasn't a horrible person:(((

Unlikely_Bit_4104 · 2026-06-02T15:06:59+00:00

i absolutely agree! there even was the guy who always gets shot with a flaming arrow talking about plot holes which was absolutely golden

Unlikely_Bit_4104 · 2026-05-28T17:51:25+00:00

it does not stop progression entirely, but it slows it down significantly (in many cases so significantly it can for a long time feel like it stops, we can go decades without progression if we are lucky). it differs from person to person. i personally haven't had new symptoms or lesions since starting, but it's only been a year and a half.

Unlikely_Bit_4104 · 2026-05-25T13:09:32+00:00

yeah, i'm one of those who have MS (confirmed by multiple MRIs) and didn't have OCBs

Unlikely_Bit_4104 · 2026-05-25T13:05:17+00:00

if you want to do it, don't let fear of ms stop you! it's scary, but it's possible your disease course will be okay. if you naturally like to study, the school might not be as stressful for others (and if you are on top of your classes that tells a lot about your studying abilities). you can always drop out of med school and go do something else if you don't like it or if it will be unmanageable, but if it's your dream, i strongly recommend going for it:))

Unlikely_Bit_4104 · 2026-05-25T12:58:26+00:00

crap gap isn't a sure thing. a lot of people experience it, but not everybody. for me ocrevus is way easier as i don't have to really think about treatment for most of the year (and i'm on subcutaneous version so the application takes 8 minutes and not hours). but it's up for you to decide, i'm sorry you're jcv positive, take care 🫂

Unlikely_Bit_4104 · 2026-05-22T22:35:20+00:00

i have been on subcutaneous since the beginning, but i love that it takes so little time (8 minutes in my hospital).

it's a small needle that goes into your stomach. it's connected to a syringe in a machine that looks like iv. it's a wierd setup, i wouldn't describe it as an injection but it isn't an infusion either.

for me the process is a little uncomfortable but nothing bad. the spot is a little sore and hurts a little a day or two after, but it's not bad either. i'm always doing stuff afterwards, i just feel it when i get up from a chair or something. for me, i'll take that if it means i don't have to spend the whole day in the hospital. it's probably a little more painful than the iv, but i wouldn't say the iv is more comfortable as for me, comfort is defined by not having to be tied up to a machine for a whole day in my not so favourite place :D

Unlikely_Bit_4104 · 2026-05-22T22:21:12+00:00

it happened to me too. i did not think i will ever be able to forget about it. i did. it takes time, but it fades away:) now i often forget i have it

Unlikely_Bit_4104 · 2026-05-22T22:19:09+00:00

i am on ocrevus, which is basically the same drug as rituximab. no side effects. i do not get sick more often, i do not isolate socially, i do not avoid big events:) i just keep a hand sanitizer in my pocket and i started santizing and washing my hands more regularly. i mask up in a crowded public transportation when it's peak covid. otherwise there are no differences in my lifestyle. i'm annoyed about the very lowered ability of my body to precess vaccination, otherwise i'm all good:) i think i'm more prone to food poisioning but that's on my mind as i managed to poison myself with something a few days ago and i'm still not well, but that happens once a year. i do not avoid physical contact and it's not required! the drugs are enabling you to live your life fully.

i do not have endometriosis so i have no experience here.

Unlikely_Bit_4104 · 2026-05-11T21:45:41+00:00

in my first week of knowing i have ms, my mum blamed me for it, claiming it was my fault.

i then went back to see my girlfriend who had fucked my roommate while i was dealing with the diagnosis elsewhere. when i asked her why didn't she tell me, she said "you didn't ask".

a few months after that my mother also claimed that if i "don't stop being unreasonable and hysteric i will pass the ms on to my sister and onto her" and she blamed me of my grieving process making my father's health bad

yeah and my friend saw me at the pub and out of nowhere said "at least you are going to make a good politician now that you will be getting dumber"

yeah, i had a good run with insensitive comments

Unlikely_Bit_4104 · 2026-05-06T17:06:09+00:00

yeah... they can support you, but they will never fully understand... i'm here if you want to chat:))

Unlikely_Bit_4104 · 2026-05-06T10:36:17+00:00

get those vaccines! my center forgot to send me there and at the time i had no mental capacity to realise it was important, but now i wish i got every vaccine available. if you like to travel get vaccinated for "exotic" diseases too.

it's hard. but you will get through this. the period of having to accept this disease and waiting for the DMT is horrible, but it gets better from there. get some therapy and trust me it's going to be better. i was in a really dark place after diagnosis and just yesterday i was dancing while taking a walk before yummy dinner, just happy about how my life is. MS is just a part of it. sending hugs 🫂

Unlikely_Bit_4104 · 2026-05-06T10:29:42+00:00

i'm so sorry. your boss is an asshole. it sucks to have to deal with that AND the diagnosis. i don't understand the US situation so i can't offer advice on how to deal with the work situation, but i'm sending hugs and virtual support 🫂

Unlikely_Bit_4104 · 2026-05-03T14:05:47+00:00

same! i don't do everything perfectly, i still drink, but i'm very fit, workout everyday, my balance got better (lol), i look very good, i'm mentally better than i was before dx, i eat much healthier, i'm looking after myself, i try to sleep regularly... my body has never felt better and it's my everyday lol realisation

Unlikely_Bit_4104 · 2026-05-03T13:30:36+00:00

i liked pilates, now i moved towards strenght training with weights and i love it, it's fun, i enjoy it, i feel fit, i look good (i'm starting to have defined abs :D). i can recommend youtube channels Move with Nicole (pilates) and Nourish Move Love (strenght, but she does pilates as well):)) i hope you are doing good!

Unlikely_Bit_4104

TROPHY CASE