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Ehlers-Danlos Syndrome User Group
Diagnostic Procedure
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
157 members
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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.  
6 Comments
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620923_tn?1405964489

  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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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.  
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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.
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620923_tn?1405964489

  No worries...if nething mayb u can get ur Dr to consult with that Dr....??
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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.
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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.
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