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Pnes - Blog Posts

7 years ago

EMT: Do you know what causes your seizures

Me: *Struggling to find a way to explain psychogenic non epileptic seizures while my brain is fried and the world is spinning*

Me:

Me: Bullshit.


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7 months ago

This actually reminds me of a time I was in a hospital at an Epilepsy Monitoring Unit. It was in a pediatric hospital because I was 16 iirc. I was supposed to be there for three days, and potentially be temporarily taken off my meds while I was there. Well the woman who did my EEG there stopped it after 24 hours. She completely ignored the directions and never took me off my meds for the time I was there.

The issue is, i am diagnosed with epilepsy. I have had it show up on an EEG before. I also have PNES, for context. Right now, my epilepsy is managed enough that my PNES is the main issue.

The fact she immediately ignored all directions the moment she saw I was having PNES episodes from the portion of the EEG she saw. If she just did what she was asked, would I have gotten a better understanding of my epilepsy?

I don’t know if this is truly malpractice or not. Just felt the need to get it off my mind.

“You know that’s medical malpractice right, no doctor is actually doing that.”

Bold of you to assume doctors actually care about what’s malpractice or not when it comes to treating disabled and intersex people


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2 months ago

I may not understand psychosomatic disorders, but damn, people definitely should stop stigmatizing them. Like, why the fuck it's called pseudo just because it has mental origin? You wouldn't call someone depression pseudo, so why the fuck you're calling functional symptoms pseudo?

Guys with FND/Conversion disorder/Idk, whatever you call it, you're completely valid. I genuinely don't care about your disease being psychogenic, you're still a legend with completely real symptoms, just not psychical origin.


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3 months ago

"Epilepsy this!" "PNES that!"

Yeah, yeah... I got it, now, when will we bring awareness about paroxysmal dyskensias? I bet, there's at least one person who's reading this post and instead of FND has some kind of dyskensia. Do not let doctors down your disorder. The thing that might be seen as psychogenic, can actually be a genetic.

Bring awareness about paroxysmal dyskensias. Do not let them put us down.


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4 months ago

Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".


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