Possible EDS Diagnosis: Seeking Advice

Have a friend working on getting diagnosed right now and another that has been diagnosed. One was referred by her pain management/spine doctor doctor to get genetic testing since she had signs he’d never seen before but only read about for EDS. She’s being sent to University of Florida genetic research department to do so. She said it’s the only place in Florida that could do it. The other started by getting a POTS diagnoses and went to Mayo Clinic treatment facility specializing in POTS- which is closely related to EDS and then they sent her to get genetic testing for EDS. From my understanding, go to a doctor and they’ll do the hypermobility tests and then hopefully see the need to send you for genetic testing and confirm. There could be other ways to go about getting a diagnosis. Hope you can get help soon!

As far as telling your PCP I would recommend telling her your symptoms and how badly their impacting your quality of life and that you want help getting a proper diagnoses so you can get effective treatment. Then specifically ask for referrals to certain doctors. Before you go in I’d also advise to look into doctors on your insurance that would help either refer you to get help or try to help you figure it out instead of brushing you off. I’m trying to get diagnosed for some out of the norm issues now and had my family ask around ppl they know that have similar issues and a hard time with doctors and ask who they’ve seen. Finally got some good referrals to better doctors that are on my insurance that way instead of having my PCP send me to whoever they typically use (which hasn’t gone well in the past).