#demyelination

[biology-geology-beaches-india]

The Science Research Notebooks of S. Sunkavally, p431.

[little-pissbaby]

PSA: tangling or tying these up off the floor is how someone like me dies on the floor of a public bathroom. if you untangle/untie an emergency cord, make sure it's resting OVER any bars in the wall so that you don't impinge its range. ty ly 😚

[redroses07]

The worst part about being chronically ill/ living with a rare disease, is I have to explain that I’m not in class cause I had an episode, fell on the floor, then couldn’t get out of bed.

[cljordan-imperium]

CJ is sick...my immune system has declared war...shots have been fired...steroids are being deployed... wie ein Modder- Igel fühlen

Ich fühl mich wie gematschte Bananen

Ich fühl mich scheiße

And gifts for my German besties for accurate descriptions of how I feel @saltysupercomputer @dreaminggoblin @writingmaidenwarrior

And I'm not contagious, so they're safe

[wheelie-sick]

I am making a list of every single demyelinating disease that could possibly be why this is happening and if neurology has no idea what to test for I'm just going to ask for them to test for all of them

I need to know why this is happening and I need to stop it and maybe if I'm lucky I can even go back and just have my normal again

[disabled-dyke]

so lets say for instance. hypothetically. someone had a clean brain mri 18 months ago, and (presumably) clean spine mris from 3 months ago, but are experiencing every symptom of ms that perhaps. ms was missed

[coffee-n-bagels-comic-universe]

God, what a journey. I have CIDP.

On the 8th of May I was told that my official diagnosis is 'CIDP' (Chronic Inflammatory Demyelinating Polyneuropathy) I have gone from the introverted but all-out goth willing to wear that blue dress into a hospital (first pic) to (with a fresh haircut) the dying to be out of the house, sill goth, geek (last pic)

I say this not to beg for sympathy but to say I'm officially disabled and finally at a comfortable point to say that, I am weird, I am Autistic, and I'm practically wheelchair-bound.

I am a rare case, most CIDP cases aren't in their early 20s with no prior illnesses before this happens to them, but I am lucky enough to live in the UK and have free healthcare, I can complain about wait times in A&E, or the slow way hospitals communicate, but I'm writing this to say that you should look out for yourself, cause you never know what will happen.

[oleander-teacup]

hey cidp gang. my dad was officially diagnosed after suspecting for several years just a few months ago and is having a really hard time with coming to terms with needing a mobility aid.

what would you suggest for easing someone into using a mobility aid? as someone else with autoimmune issues i use braces galore but i dont feel weird about using them because i know they help me to like. literally walk. so i dont exactly know where he's coming from here. any advice?

[meatcrimes]

After almost four years of no increase in symptoms / addition of new symptoms, i’ve had a persistent tingling and numbness in my last three toes on my right foot for several days, indicative of fibular nerve fraying.

just when i get so used to a condition i almost forget i have it, some new fuck shit happens.

[biology-geology-beaches-india]

The Science Research Diaries of S. Sunkavally, p 528.

[meatcrimes]

even in an accommodating world, my nerves are not supposed to fray like yarn. My central nervous system is supposed to have a rhythmic sleep-wake cycle, which it does not. even in an accommodating world there are things going on in my body that should not be happening.

sometimes you can’t prevent a fall but can only cushion the landing.

"disability only exists because the world isnt accessible" idk how to tell you this but chronic pain still hurts

[fromkenari]

If I had a nickel for everytime a doctor's diagnosis of one of my chronic conditions was an awed and slightly gleeful "that's SO weird!" I'd be able to afford my medical bills but if I just counted today, it would be $0.35 and that's DOCTORS not the rest of the medical health professionals who had the same reaction or filed in behind my resident asking if they could show the med students my paralyzed leg. Even the neurologist who finally gave me real diagnosis of chronic inflammatory demyelinating polyneuropathy could not stop smiling as he explained the little that they do know about this rare condition. I wish I could say this is the first time I've been diagnosed with a condition that has people acting like my body did a magic trick but it's not so I'm kind of resigned to it now.

@thebibliosphere have you ever sparked this reaction out of an ER rotation or am I super special in getting both the day and night shift to come in here and ask me to wiggle my toes though they know I can't and still being stunned when I really can't?

[redroses07]

This probably makes me sound like a brat, but I really wish I had the opportunity to go to the Eras Tour again. Of course I’m so grateful that I even got to go once, but when I went in 2023 I was really struggling with my chronic illness and had to spend the concert in a wheelchair. I had just gotten out of the hospital a week before, so I was still learning how to navigate life with a disability. It was an overall very stressful experience for me. I’m now walking again and can’t help but want to see the show again.

[greenwoodbotanics10]

MS Mysteries Unlocked: Early Clues, Lifespan Secrets, and a Radical Cure?

MS Mysteries Unlocked Multiple Sclerosis (MS) is a complex and unpredictable disease—but what if we could crack its code? From strange first symptoms to groundbreaking stem cell treatments, here’s what science reveals (and what still remains a mystery).  The Weird First Signs of MS Your Doctor Warned You About MS doesn’t always announce itself loudly. Instead, it whispers through bizarre…

[atomicdaydream]

Every damn time! Especially the ER! Even tho l clearly have 2 different autoimmune conditions!!!

[springstick]

A Kinda Ramble About Health

Sorry for not posting for a few days. I have been struggling with my immune condition a lot recently. I've been getting really bad tremors in my hands, and loss of motor function, and temporary paralysis in my right hand (probably from overuse / note taking). I have a hard time writing and typing. I'm working on getting appointments set up with my doctors, but it's a week before finals and my neurologist is 2 hours away. Does anyone who has CIDP have any advice?