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I havent been diagnosed with hEDS but I am suspected to have it and am setting up an appointment to get tested. what can I expect from being tested? what do those of you diagnosed with it wish you knew prior to testing? advice please!
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Symptoms Involving Nervous & Musculoskeletal Systems
Ehlers-Danlos Syndrome (EDS)
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I was diagnosed when I went to get tested for a bleeding disorder, and when that came back negative, the doctor had me answer some questions on how I scar (raised scars) and if I bruise easily and then had me to the skin stretch and then different stretches and concluded that I have hEDS.
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There is no genetic test for hEDS. If you get the genetic testing it's basically to rule out the other types... that being said my official diagnosis appointment involved seeing a pain management doctor that specializes in EDS and hypermobility. He basically checked a bunch of stuff and had me stretch in a bunch of different ways. I've watched Izzy Kornblau's videos on YouTube and learned quite a bit since being diagnosed. She has a video of testing criteria
☝ 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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