Aa
A
A
Close
Avatar universal
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.  
Discussion is closed
Cancel
6 Answers
6 Answers
Page 1 of 1
620923 tn?1452919248

  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
Discussion is closed
Cancel
Avatar universal
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.  
Discussion is closed
Cancel
Avatar universal
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.
Discussion is closed
Cancel
620923 tn?1452919248

  No worries...if nething mayb u can get ur Dr to consult with that Dr....??
Discussion is closed
Cancel
1903798 tn?1333908888
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.
Discussion is closed
Cancel
Avatar universal
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.
Discussion is closed
Cancel
You must join this user group in order to participate in this discussion.
A
A
Recent Activity
620923 tn?1452919248
Blank
selmaS commented on The_Marine_Corp_Brat's status
Apr 27
620923 tn?1452919248
Blank
selmaS commented on gjjl's status
Apr 04
620923 tn?1452919248
Blank
selmaS commented on gjjl's status
Mar 31