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Rowboat

611d

It has been over a year and a half (Feb 2021) since I have suspected hEDS or HSD. I have been to an insane amount of doctors appointments, physical therapy, and after ruling out so many other things my rheumatologist has said he believes I have EDS. He said he can’t diagnose me, but will be trying to get me into a specialist who can. He said it’s extremely difficult to get into and even if I can’t get a diagnosis, it’s important to know what I’m dealing with (i.e. EDS). I am relieved, frustrated, and scared all at the same time! It took so long to get this far, and I’m so scared this is as far as I might be able to go. I’m basically just accepting it at this point. I’ve heard of EDS places not even accepting hEDS patients anymore because there’s just too many. I’m afraid that’s what’ll happen with me. But I need a diagnosis for SSI. I also deal with multiple other chronic illnesses and disorders and I’m trying to build a case because I’m barely working 10h/wk and I still miss shifts due to everything I suffer from.

Top reply
    • Rhoda

      605d

      You need to go to a geneticist. I live within a 2-hour drive to NYC so I have access to a wide array of specialists. Get yourself a referral to a geneticist in the biggest metro area to you

    • Rhoda

      605d

      You need to go to a geneticist. I live within a 2-hour drive to NYC so I have access to a wide array of specialists. Get yourself a referral to a geneticist in the biggest metro area to you

    • Scorpiostelliem

      611d

      If you share what area you are from maybe some ppl nearby can help direct you! As person above said, sometimes there’s other types of doctors that can and do diagnose it. I was diagnosed not by my geneticist but by an osteopathic doctor in internal medicine. We found out about him through referrals of other patients through dysautonomia international!

    • Cath66

      611d

      It took me ages to get diagnosed as well! I actually went to a genetic specialist for migraines and they sent me to a cardiologist who ended up diagnosing me. I’ve only been to one specialist and the second time I saw him he said “you can’t have EDS because your not flexible” and then I showed him what I could do. He didn’t even ask if I was flexible in the first appointment. Finding EDS specialists are really hard because there’s still not a lot we know about. I really hope you get in to see one soon!!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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