For those of you who still read this and care.
I’m so tired of being dissapointed by doctor visits. He read through my papers I brought on EDS and POTS and said it certainly seems possible that’s what’s wrong with me. But he doesn’t have the expertise (or something) needed to do more. He told me to try to get into a research study at John Hopkins or somewhere. And I have a three month follow up appointment. And that’s that.
I looked up various research studies today and only found one that I fit the criteria for (it’s at NIH). I emailed the contact person but who knows if I’ll be accepted or not. The study is for connective tissue disorders, including EDS, and the effects it can have on other health issues or something.
So yeah. Basically I’m on my own with this I guess. There’s a doctor in Ohio that’s like the POTS expert, but he’s booked until next December.