Hi Allyson sorry for taking a few days to reply. I only look on here periodically.
I'm based in the UK, and I got the EDS 3 diagnosis from Prof. Mathias at the National hospital of neurology in London. I finally got my GP to refer me there as my autonomic symptoms were getting worse. In fact it was only through google that I found the Prof. So I was only going there really about autonomic problems. He quite quickly diagnosed me with EDS3 though, based on taking a detailed medical history and asking me to do certain movements like touch nose with my tongue. Skin writing called dermagrahica rubis (i think thats the name) I also exhibited. The diagnosis did come as a shock to me, I had looked up EDS before, but its always the worst case they present on the internet. Very stretchy skin, frequent dislocations etc. none of which I had. I am flexible, but I was an elite sprinter when I was fit, so flexibility was to be expected.
For anyone else reading this with autonomic probs in the UK. My GP only agreed to refer me after I had been to see the local ME clinic, who said i didn't have ME (as being tired/fatigued wasn't my main symptom), autonomic dysfunction was. Whether I do have ME or not I think is semantics. I def have autonomic dysfunction, and I didn't display the symptoms my ME clinic were looking for.
In addition to Prof Mathias, I am also due to see Prof Grahame next month also at the same hospital for my EDS3. I believe the Profs work quite closely together. I was able to see the two Profs relatively quickly, but I am a private patient, an NHS referral was possible but it meant many months of waiting.