this post was submitted on 09 May 2025
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Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

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[–] gashead76@lemmy.world 8 points 1 month ago (1 children)

My neurologist has been throwing every test at me and so far all they've come up with is vestibular migraine, which I've had complicated migraine my whole life and never had the symptoms I do now (that started out of nowhere about a year ago). Which include ataxia, nystagmus, tremors, and a whole host of other neurological symptoms...

So not diagnosed with MSA, but empathic to your situation. I would have never guessed how much more debilitating neurological conditions could get after having spent 40 years with migraines that would sometimes keep me in bed and in agony for days at a time every month of every year.

The muscle weakness, loss of coordination, tremors, and general bodily dysfunction disables me more than those horrible headaches did and I previously couldn't have imagined that would be true. And all this just as I finally got my head pain stuff under control! It's enough to make me wonder if the solution to that may have caused the new problems, but that's another thing.

Anyway, I can't speak to your specific condition, but I know neurological dysfunction all too well and if you ever need to talk about it, my ears (and eyes) still work (sort of), for now... (gallows humor, can't help it).

[–] Pandemanium@lemm.ee 3 points 1 month ago

Probably a long shot, but have you by any chance had exposure to dioxin (agent orange) when you were young? Like growing up on military bases or someplace like Laos or Vietnam?

I know a few people who have those symptoms, and they had significant dioxin exposure as teenagers, though the symptoms didn't start coming on until they were in their mid-to-late 20s. Being exposed as an adult would not result in disability, however. It has to be during development.

[–] Strider@lemmy.world 5 points 1 month ago

As a fellow (critically, but not msa) neurologically affected I wish you all the best and yes, talking helps.