Help! Seeking Diagnosis for Debilitating Symptoms

I have some sort of medical mystery going on with POTS-, Ehlers-Danlos-, and chronic fatigue-like symptoms. No one can diagnose it, and my MRI is clear. Has anyone had a variety of debilitating symptoms, and what was your eventual diagnosis?

Your answer

Krissyann

2y ago

Hi! Do you have trouble with sleep and did you have a virus such as Herpes in the past? If yes I would push towards getting an ME/CFS diagnosis. You must have sleep trouble to have ME.

stars

2y ago

i have a diagnosis of idiopathic hypersomnia, and i’ve had a lot of repeated infections, but no EBV that i know of. EBV is definitely on my radar since a close family friend has it chronically. thank you!!

Osnapitzkat

2y ago

I am labeled medically complex and have yet to really get answers. My main diagnosis is Behçet’s disease it’s rare so doctors aren’t really sure how to handle it.

JustRachelle

2y ago

Fibromyalgia ! Because when they can’t “find” anything wrong.. it’s that apparently

stars

2y ago

see, i think i’m going to get diagnosed with a functional neurological disorder (AKA it’s all in your head). i have periodic stroke-like episodes but no concerning markers 😑

NikkiJay

2y ago

❤️YES! That's my issue currently. Pain and inflammation in all my joints only brought on by extreme fatigue and I get labeled "fibro" and prescribed ibuprofen 🤦‍♀️

Osnapitzkat

2y ago

I’m laughing because this does seem to be doctors go to when they don’t know what they else it could possibly be.

colorfulcrouton

2y ago

Perhaps get a full blood work done. Not just the standard physical but more in depth including all vitamins and minerals. Could be a deficiency.

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