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Possible EDS Diagnosis: Seeking Advice

Beautiful_Disaster_

549d

I think I have EDS . I have symptoms . Double joints in thumbs heart valve problems degeneration disc disease bruise easily SI joint dysfunction very soft silk like skin was born with scoliosis when born and after laying down sometimes I get dizzy lightheaded . How can I get diagnosis ? How do I tell my pcp I have symptoms of EDS ?

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    • KitKat1450

      549d

      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!

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    • KitKat1450

      549d

      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).

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    • KitKat1450

      549d

      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!

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      • Beautiful_Disaster_

        549d

        @KitKat1450 how do I tell my doctor that I think I have EDS ?

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      • Beautiful_Disaster_

        549d

        @KitKat1450 I’m in Michigan is there any drs in Michigan that specializes in EDS ? & do think I’m in vascular or hyper mobile ?

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        • KitKat1450

          549d

          @Beautiful_Disaster_ I’m not sure about Michigan. If I were you I’d just start googling doctors that deal with EDS and POTS in Michigan and doctors and research places that do genetic testing and see if you can find any leads. And as far as telling your doctor, the comment below this one hopefully helps. I would always advise against saying I think I have this because more often than not they think you’re being dramatic, which sucks. My rule of thumb is always say these symptoms are causing pain and difficulty doing activities of daily living and reducing my quality of life. Write out all your symptoms on a piece of paper any give them to PCP. Found that’s the best because I write them out on my phone but then get nervous to bring them up or forget to mention certain ones. Literally hand the list to your doc. And ask for specific referrals. Hopefully some other ppl comment on this to help that have either more or better info!!

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☝ 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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