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FallenFeylah

Updated 1y ago

Struggling with hEDS Diagnosis: How Long Did It Take You?

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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Scarlet9904

2y

From first hearing of it 3years and 4 doctors took a genetics doctor to get my eds diagnoses
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BumbleBree

2y

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!
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AraS

2y

Once I was sent to a geneticist, he diagnosed me in five minutes.
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FallenFeylah

2y

AraS. That gives me hope
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pricklypear

2y

Dislocations started age 7, diagnosed at 15 😅
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greenbeans

2y

10 years of random illness. About one year after a doctor recognized it and sent me to a specialist.
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Kat_A

2y

6 years and a lot of pushing to get my drs to put it on paper
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Berta

2y

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

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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