My neurologist referred me to a rheumatologist to evaluate EDS (my request). She referred me to the rheumatology group at University of Cincinnati. When I contacted them they indicated none of the rheumatologists there have experience with EDS. I looked online for a list of doctors but I only saw chiari recommended doctors.
Has anyone seen a list of recommended EDS doctors? Or can any of you make recommendations? I need to stay in the Ohio area for insurance reasons but I will take any recommendation since I may have to request special permission for treatment anyway.
Karla, glad to hear your doctor agreed to get you tested. I hope you are able to find someone to take care of that for you. Beeba's idea was a good one, the teaching hospital would be my first stop.
Hi Beeba- Quick question since you seem to know a lot about this EDS. I am still waiting on some results from my NS on the tethered cord issue, but I have to go see her soon and am going to ask her if she would be willing to write a refferal for testing for EDS. My question is, if she refuses, how or can i find a doctor on my own to get tested? My NS is already wanting to schedule me for decompression asap, but i truly would feel better about that decision if i had been tested to rule out the EDS.