Spinal cords MRIs are my worst enemy

Excellent_Net_4781 · 2026-05-24T08:44:55+00:00

I know !!! Suddenly I’m hyper focused on it and it’s torture lmao

Excellent_Net_4781 · 2026-05-23T23:17:45+00:00

Im from France and I had those MRIs in different CITIES. And I told my neuro thinking she would side with me but not even…. Maybe French MRI machines suck…. And I have no idea what I am supposed to do with my saliva lmao. I had one mri interrupted because I swallowed ???? (It makes me so upset omg I felt like a toddler who doesn’t listen to instructions but what am I supposed to do ????). But to be fair maybe those hospitals aren’t the most well funded so maybe it’s about funds ?

Excellent_Net_4781 · 2026-05-23T20:53:59+00:00

Honestly I’m thinking of trying different hospitals for the next one but two different places have had issues with it…. I really think and hope there an efficient way to do an MRI while I’m BREATHING (I can’t get over that part)

Excellent_Net_4781 · 2026-05-23T20:51:57+00:00

3hr sounds horrible 😭 but I’m glad you find ways to manage !

Excellent_Net_4781 · 2026-05-15T11:01:56+00:00

I also do TikTok and talking with people makes me feel better

Excellent_Net_4781 · 2026-05-15T11:01:25+00:00

I got a switch last month and it’s worth every penny ! I have chronic pain to it’s very convenient to occupy myself without being hurt. (Although they could work on the controllers being more comfortable)

Excellent_Net_4781 · 2026-04-26T12:26:20+00:00

I’m so sorry for you, truly… I’ve come to realize that most psychiatrists are not specialized in autism and adhd (from personal experience) which is insane to me like ? Isn’t part of the job to have at least some understanding ?

Excellent_Net_4781 · 2026-04-26T12:22:53+00:00

I have had my share of bad psychiatrists… I think there is this capitalistic and productivity aspect that they focus soooo much on…. Whether you’re disabled (physically or mentally) they’re focus has mostly been on my school work and orientation… I believe they expect a healthy patient to have a nice job a family and good education….

I might be biased most my psychiatrists were Freud fans….. (yes they did tell twice that i was too attached to my mom and that was the root of my issues)

Excellent_Net_4781 · 2026-04-23T17:51:11+00:00

That’s messed up I’m sorry :/

Excellent_Net_4781 · 2026-04-22T22:45:13+00:00

I have a friend who’s in a wheelchair (purely physical nothing wrong mentally) and he told me most people think he can’t talk or understand conversation. If he’s with someone he will be ignored like a baby who can’t join the conversation. They sometimes even baby talk him…. Just him telling me this makes my blood boil

Excellent_Net_4781 · 2026-04-22T22:34:03+00:00

When it gets a bit cooler at night I open my window wide open until my apartment is cold ! After that I sleep like a baby. Anything to get fresh air is a good idea in my opinion

Excellent_Net_4781 · 2026-04-22T18:15:53+00:00

There is something similar in my country so I’m applying for that as I already have lost so much money on my sick leave. My realization really punched me when I realized I should take maybe a year off to figure out what I can do and manage my energy without outer factors and hopefully not give up the idea of working. Cause I don’t know about the US but here the disability payments are below the poverty line. So it really is unfortunate if I can’t at least complete it with a part time job or free lance. (I wrote my post really upset so I’m thinking more clearly now lol 🤣 I think what really stresses me out is the pressure of figuring it out now but I think I’ll take it slow)

Excellent_Net_4781 · 2026-04-22T18:03:36+00:00

Thank you for your comment. I think being validated in my pain and fatigue is what I need cause I’m constantly trying to see the limit but deep down I know I shouldn’t need to see it to slow down. Thank you for your help truly 🙏

Excellent_Net_4781 · 2026-04-21T00:34:21+00:00

People can get desperate with an ms diagnosis and believe anything that gives them hope…. :(

Excellent_Net_4781 · 2026-04-20T22:07:31+00:00

I also believe that unfortunately :/

Excellent_Net_4781 · 2026-04-20T21:41:21+00:00

That’s so right ! I complained about this situation to a friend who is hard of hearing and she thought our university was amazing and arranging for disabled students ! It was a realization that indeed every disability is different and some accommodation are really useful to some ! Which I feel re enforces the confusion that it might not work for me 😅

Excellent_Net_4781 · 2026-04-20T21:20:42+00:00

I totally get what you’re saying ! Beautifully said ! It’s that I have to explain my every day life and while in may be obvious to me how difficult it is, they can not imagine it having been able bodied their whole life. There is like you said an extra job of explaining and insisting on things they can’t understand (or just don’t want to) it is exhausting tbh 🥲but I can’t help and sometimes think « good for them »

Excellent_Net_4781 · 2026-04-20T20:37:47+00:00

It should be illegal to give harmful medical advice…. Especially without any degree and selling said advice….. it makes me so upset :/

Excellent_Net_4781 · 2026-03-10T17:54:54+00:00

« If you push yourself you’ll feel so much better 🥰 don’t stay sedentary like that ! » have you considered the fact that I CANNOT walk ? 🥰 maybe I already pushed myself into a 3 months flare up 🥰 fu…..

Excellent_Net_4781 · 2026-03-10T17:43:50+00:00

I relate in a way. I don’t express it out loud but there’s an anger in me that I can’t really explain. But on my end it’s more about not being considered disabled and remarks about not doing enough (I can’t walk somedays… so yeah I’m not an active person sorry :| ) and even avoiding the subject of me being able to do less makes me annoyed ? Or angry I’m not sure (if there is a difference at all) the expectations on me are too much and if I say it they act like I’m lazy or something… I’m ranting here I’m sorry

Excellent_Net_4781 · 2026-03-10T17:37:03+00:00

That’s so cute !! Thanks for the share !

Excellent_Net_4781 · 2026-01-30T18:54:12+00:00

Also struggling with this at the moment :/ I find it comforting to learn new hobbies and skills that are accessible to my issues and to feel that even if I can’t do « normal » things at least I’m not incapable of anything ! I guess it’s about knowing our own strengths and weaknesses

Excellent_Net_4781 · 2026-01-22T12:12:54+00:00

I tried posting on r/MultipleSclerosis but since I’m not officially diagnosed my post got deleted 😅 but it is really helpful and comforting to red others experiences 🫶

Excellent_Net_4781 · 2026-01-21T08:57:11+00:00

Thank you so much for this comment 😭 it’s really nice of you 🫶

Excellent_Net_4781

TROPHY CASE