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hello.its.me's Post
hello.its.me
6mo ago
Seeking hEDS Diagnosis: Should I Trust the Specialist?
got told by a doctor I most likely have hEDS but that there wasn't treatment options in my area so he wouldn't diagnose me. sought a different opinion and that doctor said I have to see a specialist in London for genetic testing to be diagnosed despite there not being a known genes for hEDS. Do I just go along with the referral and hope the specialist will sort it all out?
Your answer
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Doglover25006
6mo ago
I agree genetic testing is a good idea if you can do it. I have an hEDS diagnosis because nothing showed up on my genetic testing to indicate another subtype. However please keep in mind more genes that play a role in EDS are still being discovered for all subtypes.
Due to the emergence of new symptoms since my genetic testing 2 years ago my hematologist is concerned I may have vascular EDS not hypermobile. My genetics doc (I’m in the US and my doc was in Florida at university of Miami genetics) recommended I be retested every 5 years as medical research into EDS and genetics as well as technology for genetic testing evolves.
hello.its.me
6mo ago
thanks for this! I'm going ahead with it after being more informed. They think if they find anything itll.most likely be cEDS or clEDS, but if i have the same outcome as you, I'll definitely asked to be retested on a regular schedule! Fingers crossed they find something that helps you best!
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