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.
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....
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.
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.
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.
Copyright 1994-2016MedHelp International.All rights reserved. MedHelp is a division of Aptus Health.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.