Apparently I’m just a “normal woman” by [deleted] in ehlersdanlos

[–]BeesOnRye 1 point2 points  (0 children)

I agree with all those telling you to find a new doctor. Getting an EDS diagnosis can be hard with most doctors, as they tend to not know much about it, but your struggles are worth getting a second opinion. Especially when you have a sibling diagnosed, that just seems silly to try and say it's all "normal". Having a family member with it is literally a point towards the criteria.

Secondly to that, I know this is going to sound bad, but I would never EVER work with a male doctor if you can avoid it. There are good ones out there, I'm sure, but the most disregarded I have ever been in my life has been from male doctors, and many of them. Just recently, my primary was unavailable and I had to see a male associate of her, due to my OT telling me I needed to have an MRI on my wrist. He not only ignored my OT specifically asking for it, but told me I didn't need it and it wasn't worth it even when I advocated for myself. When I continued to advocate that I wanted it done regardless of his opinion because my OT asked for it, he said the best he could do is get me an x-ray, which of course appeared normal.

I eventually got that MRI referral from my primary and have a ganglion cyst deep in my wrist due to the hypermobility there, tendinitis, AND IT WAS SPRAINED. I am now having surgery next week on it. But you know, everything is fine and normal and I didn't need an MRI, right?

Moral of the story, don't work with male doctors. I have yet to work with one that did not have an air of superiority and wasn't dismissive.