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Diagnostic Procedure
I have Hypermobilty Syndrome (9/9) and several other issues that let my doctor believe I might have EDS. He ordered a cardiology referral and a dermatology referral for skin biopsy. What other tests are there? My doctor never had a patient with EDS and does not know everything about it. Due to insurance I can not change doctor and I really like my doctor. Please let me know how you were diagnosed.
Have your doctor refer you to a rheumatologist, as EDS is a condition of the soft tissues and immune system. Avoid orthopedic physicians. Also check out hypermobilty.com, a website in England. Lots of good information there and insight into current EDS reserach if you have the hypermobile variety.
Do your research online also. Since most Dr's have never seen anyone with EDS I often have to take documentation with me and say look here see this...I think this is going on. You are usually right but have to prove it to get them to look at it.
No worries...if nething mayb u can get ur Dr to consult with that Dr....??
Thank you so much for that list. One doctor is actually only 20 minutes away from me, and also a Tricare Provider. I sent an email to my doctor to see if I can get a referral to that specialist.
Thank you. He sent me to dermatology for the skin biopsy. Its withing the military network, he wasn't quiet sure how that genetics would work, so that why he suggested starting out with dermatology. As I'm stuck to the military medical facilities, I'm sure it could take a while till I see a genetics doctor.
Hi...ur Dr would generally send u to a geneticist for a skin biopsy once u have the Beighton score ...and u have 9/9 ..but u may have other joints that are hyper mobile ...as that test is not all inclusive.
See the videos by Dr Driscoll at the top of this forum...she explains how the testing and types of EDS there are....
I was Dx'd by a NS and NL and told to see a rheumatoid Dr that specializes in EDS,,,,I have yet to get to her but some of the members here have,....I am not familiar with Drs in CA....but found this list online....
http://dyingtolive.info/doctors.html
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