Eds/hypermobility

[cardiactec]

hey, to those of you diagnosed with EDS/hypermobility, how were you diagnosed? is there some sort of collagenous testing they do?

[MightyMouse]

Not usually. It's usually diagnosed by physical exam, using the Beighton Scale. See the http://www.ednf.org website for more information.

Some types of EDS are diagnoseable by biopsy of certain tissues, some are not, some are able to be diagnosed by genetic screening and some are not--hence, most of all, a knowledgeable doctor, taking a good history and doing a good basic physical should be all one needs to get an accurate dx... ah... in the perfect world...

I wasn't diagnosed with EDS until I had a failed spinal surgery in 2002--at age 38.

nina

[cardiactec]

hey mighty mouse, what do you mean "failed spinal surgery"? what happened?

i dont know, i think sometimes that there is some sort of connective tissue factor with me. i can do a lot of the contortions, especially the one with rotating the thumb onto your wrist. i can lay my whole thumb entirely on my wrist. i also had a bunionectomy on my foot over a year ago and guess what, still hasnt healed. i always have legs/joint pains. actually during my "growth spurt" i remember/as well as my parents, me lying on my parents bed shaking, teeth chattering and all, because the pains were so unbearable. MVP is also a type of connective tissue issue. and my mom has a dilated aortic root. her cardio says it's just from high BP though and not connective tissue, so he doesnt draw any connection btwn my mom's condition with what i am going through. i asked my cardio once about EDS and he said "well you arent throwing your back out or anything"......does it really have to be THAT bad in order for them to investigate the possibility of EDS as a diagnosis?

[Lukkychrm42]

My cardio said I was, and then I went to a rheumatologist for arthritis, and he saw it and sent me to a geneticist who discussed lots of family and medical history, and examined me.

Like MightyMouse said, the skin biopsy won't diagnose hypermobility type, and they *probably* won't do the biopsy unless they suspect you have a different type.

In my understanding, leaky valves/ MVP can be common with EDS, though I have never heard of the dilated aortic root thing.

[MightyMouse]

Use the search feature to find my old posts on the topic of spinal surgery. The short story is that the graft never integrated or developed a blood supply, and then collapsed. Thankfully, the bone shards shot out anterior, because otherwise I'd be dead...or a vent dependent quadriplegic. I had a second surgery on the same location (c5-6) with a graft from my hip, which, thankfully healed. I spent a year out of work but am grateful to be alive and relatively active given all my health issues.

Nina

[Guest Julia59]

I am diagnosed with EDS---and didn't get officially diagnosed until 2004. Then again in 2005---exactly a year later. My spinal surgery did not fail---as far as I know---but I had a titanium plate added where I had my disckectomy fusion on two levels. Unfortunately, I have had an increase in instability above and below the area in my cervical spine that was fused----probably caused by the EDS.

I was lucky in that a plate was added, but unlucky in the fact that having the levels of C5, 6, and 7 secured, that made things worse in the other areas in which I also have buldging and herniated dicks, and a bunch of other problems----see my signature line below........

Yesterday I had to do a functional capacity exam---and I could only do very little, but what I did tore me up. I have so little support in my neck, shoulder, and upper back area---and continuously subluxate my shoulders---especially the right shoulder blade. I simply can't bear any weight---lifting anything over 10 pounds. From what I understand there is a lot of joint and muscle pain associated with EDS.

Here's a link with more information:

http://www.cincinnatichildrens.org/svc/alp...ent/marfan-eds/

Take Care,

Julie :0)

[BendyScooby]

I was diagnosed last year via a physical exam.

[MotleyLori]

I was diagnosed in 2003 at Cleveland Clinic after a post-op bleed. There were overlooked symptoms (blamed on me "too thin, too anxious, not careful enough etc. etc. etc) all my life. Most of you who took the long road to diagnosis know what I mean there without further explanation. My diagnosis was confirmed as hypermobile at Cinci Childrens in 2004 and then a bleeding disorder was added in 2005 to explain the bruising and bleeding as I tested negative for VEDS. My diagnosis is based on physical exam, hypermobility score, history of bleeding,bruising, ruptured ligaments, tendons, blue sclerae.

Lori