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I know there are skin tests that can be done to see how much collagen is in your skin and if there is some sort of lack there in some way, but other than that I have no idea how they diganose. I recently went to a rheumatologist and was told I simply have fibromyalgia. Which is ridiculous becuase I have an amazing amount of sublexation and laxity in my joints and all the other symptoms of EDS
So what I'm curious about is, what did your docs do to diagnose you with this? I will demand these tests because I want accurate diagnosis, I think I deserve that much for all the pain and sufferage this horrid disease causes. Please help! Posted on 11/09/11, 09:06 am |
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There's only one reliable genetic test, to rule out Vascular Ehlers-Danlos. For all other types, diagnosis is supposed to be done by careful examination, mostly involving the Brighton Criteria.
http://en.wikipedia.org/wiki/Hyperm... A geneticist should know how to evaluate for EDS. Should. 
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Its a Beighton scale, measure this at home, an orthopod or PCP can measure. 4 is considered significant. Plus an ECHO can check your aortic arch for vascular evidence. If you can afford a geneticist try to find one who is interested in this condition.
You probably already know about the skin, oral, feet, etc. www.coreconcepts.com.sg/mcr/beighto...
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I figured it out myself several years before my knee replacements. The orthopedic figured if out after he did the first knee. Then he sent me to a genetic counselor and geneticist who confirmed it. Hope this helps.
Melinda
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After seeing every kind of joint specialist, I was sent to a genetic counselor who instantly diagnosed both my mom and I.
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I was working in a connective tissue disorder clinic, showing the Beighton Scale Criteria to a patient. After the session, the geneticist asked me to show it to him again - then we went through my family and personal medical history. He diagnosed me.
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Similar to cheerprincess, my daughter was seen by a dermatologist for an unrelated issue, and while there she was goofing around and turned her feet backward. The derm walked in and saw her, then called in another doc and immediately got on the phone with a pediatric geneticist in the big city who specializes in EDS. That was the first I'd heard of it. At the appointment with the geneticist, both she and I were dx'd with it. Of course I was also sporting a dislocated rib at the time... :)
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my father and all of his siblings had it. I got it but my brother did not. i really cant remember how. I just have been telling others that it is hereditory. the very first time i ripped my skin open when i was two on something not sharp my dad knew. i remember getting stiches from a rug burn!
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I was misdiagnosed with Chronic Ankle Instability for a while, then I went to a different doctor, he took one look at my ankles and did the Brighton test (and I had no idea what was going on) and then he told me I had ED. I haven't been to a geneticist yet
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I went to the Hematology department at Nationwide Children's. They diagnosed me there by Pricking my arms and seeing how long it took for me to stop bleeding and they checked me out for all the symptoms of EDS.
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I was diagnosed early by my pediatrician. I was very flexible and I imagine the beighton scale was used. I have very soft skin and bruise easily. Healing takes a really long time.
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