Does this sound like EDS?

Hypermobility Forum for people with Marfan, EDS: SYMPTOMS: Does this sound like EDS?
Top of pagePrevious messageNext messageBottom of pageLink to this message   By L. D. A. on Tuesday, August 05, 2003 - 06:50 am:

Please forgive my long history. As a child able to do contortionist activities with ease. Easy bruising and nose bleeds. Developed kyphoscolios as a teen, 3 years in a brace. Had a baby at age 20, developed huge wide stretch marks that have never healed. Bled for 6 weeks after birth. Developed progressive joint pains over next decades with "nothing wrong on labs and xrays" treated like a hypocondriac.Ruptured ACL, extensor tendon in finger, had "psuedo gout" of rt great toe. Have plantar fascitis. Have Raynauds. Had hysterectomy for unrelieved pain, had pelvic laxity. Am hypermobile in many joints. Developed post-op bruising after ACL and hyst. Became severely anemic post-op with huge subcutaneous hematoma formation. Have MVP with regurgitation and trivial insufficiency of other valves. I feel my hip snap out of the socket (doctors roll their eyes at this) and many of my joints are hypermobile.I am extremely "clumsy and uncoordianted". My scleara are blue. Have other symptoms. Was given a diagnosis of benign hypermobility syndrome with Marfanoid habitus in January after a prior rheumatologist blew off my symptoms and told me "you make yourself hurt". Now due to the extreme post-op blood loss and bruising have had coagulation workup and platelet studies which are essentially normal so I have asked to be referred back to rheumatologist to find out if my "benign" condition is truly "benign". Does anyone have any advice for me. Also, none of the doctors will treat my joint pain as labs and most xrays are normal ( I do have spur formations in back and right heel) My insurance will only cover 50% of physical therapy to a lifetime max of $3000 so is basically worthless. Any suggestions most appreciated. Sorry for long post.


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