Rare happy news RE getting diagnosed in the US - had my long-awaited rheumatologist appt this morning amidst VERY low expectations. Well, the doctor was wonderful. He does not treat EDS, but he listened patiently to all of my symptoms, did a thorough exam, and rather than dismissing me, seemed surprised that I hadn’t had all this checked out before! He dx a 7/9 on Beighton (I thought I had a 5), and immediately ordered an echo, x-rays, bloodwork to rule out autoimmune disorders, and best of all - he referred me to the only doc in the (huge) health system who deals with EDS. This doc only recently took an interest and doesn’t turn up on searches, so I would never have found her on my own. I am feeling SO RELIEVED and thankful that my diagnosis journey may not make that 10-15 average after all! :)

Posted by ClaireS at 2023-01-31 19:04:20 UTC