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760d
Hi, I struggle with possible hEDS. I’m in the process of getting a diagnosis. How long did it take everyone else to get diagnosed?
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Ehlers-Danlos Syndrome (EDS)
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745d
If you think you have it go to a geneticist who specializes in it then it’s a blood test for all the Eds and a physical eval for hEds . But if you don’t specify go and say you want the tests it could be years and years so go get the tests done
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6 years and a lot of pushing to get my drs to put it on paper
747d
10 years of random illness. About one year after a doctor recognized it and sent me to a specialist.
748d
Dislocations started age 7, diagnosed at 15 😅
758d
AraS. That gives me hope
Once I was sent to a geneticist, he diagnosed me in five minutes.
I’ll tell you when I get there. I have a fibro diagnosis (took 4 years to get) and now, 3 years later, my chiropractor just told me that she is almost certain I have it. Luckily the pain doctor I’ve been waiting for an appointment with for over a year and see in April is the same person she recommended I see for a diagnosis. Fingers crossed it works out!
From first hearing of it 3years and 4 doctors took a genetics doctor to get my eds diagnoses
☝ 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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