Last reply 7 months ago
Ehlers Danlos Diagnosed

Hello, So I’ve been trying to figure out some problems I’ve developed But it’s been difficult because I’ve also been diagnosed with Ehlers Danlos Syndrome (last week).

My problems started a few years ago and I’ll make this part quick because this may be from EDS. I became very ill feeling in my knees hurt for days now was unable to get up off the couch. It was sort of like having the flu. After this I noticed I developed a strange sensation around the temples of my forehead that picked up when I was stressed it was like someone pushing on them or stroking them.

Fast forward to may of this last year. My knees began to hurt again. I had this giant electrical bolt go down my spine and that’s when I had a million other symptoms erupt. I couldn’t concentrate, had Vertigo I started to sway. At 1 point I had diagonal vision and fell over. My legs stiffened like rods and I could barely walk. I couldn’t remember where the cops were…in my own home. Numbness in my face that turned into pain!! Headaches medicine wont erase. You get the idea. It seemed like every time I turned around I had a new problem.

I’ve had an MRI on my brain without contrast done. 1 spot, normal.

I have another 6 month wait because my referral was botched.

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7 months ago

Hi @forest_evelyn_rain and welcome.

I can understand why you’ve joined us. Those symptoms need an explanation. It doesn’t seem to fit with the type of problems that EDS may give you.

Personally, I’d be complaining if my referral was botched, but I don’t understand the American system of healthcare.

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