tpapik Posted March 10, 2013 Report Share Posted March 10, 2013 I was having alot of spine pain- i went to the ER Xrays negetive and for some reason this infectious disease doc i work with i was tlaking to him about my ANA 1:80 speckeled. and he goes "I think you have mixed connective tissue disease" what the heck?!? all he did was spin me into another worry just want to know if anyone has good info on it or should I just put it in one ear and out the other , hes not even a rheumo. my symptoms aretachycardiaweight lossgurgaly stomach.spine pain......... le sigh i hate workin in hospitals sometimes Quote Link to comment Share on other sites More sharing options...
Racer Posted March 10, 2013 Report Share Posted March 10, 2013 It was suggest I have a connective tissue disorder when I was first looking for a diagnoses (and was misdiagnosed), since I have bad hypermobile joints that dislocate all the time. I spent some time reading about "Ehlers-Danlos Syndrome" and "marfan syndrome". If you dont know anything about those, you might want to look them up.I see many people with EDS on the forum that might be able to give advice. Quote Link to comment Share on other sites More sharing options...
tpapik Posted March 10, 2013 Author Report Share Posted March 10, 2013 who diagnosied you with EDS- a firend of mine things i have it . Pale skin, my elbows are hypermobile, I popped my hip out of place in 2010 otherwise I was a gymnast for 18 years but not nearly as flexible so i dont know Quote Link to comment Share on other sites More sharing options...
Racer Posted March 10, 2013 Report Share Posted March 10, 2013 who diagnosied you with EDS- a firend of mine things i have it . Pale skin, my elbows are hypermobile, I popped my hip out of place in 2010 otherwise I was a gymnast for 18 years but not nearly as flexible so i dont knowI was never diagnosed, it was just suggested as something I should possibly look into. I really didnt look into it any further, since hypermobile joints really dont cause me much trouble. I was way more concerned about the cardiovascular side of things. If a doctor thinks you possibly have EDS or a connective tissue disorder, make certain you have had all the proper cardio tests! Quote Link to comment Share on other sites More sharing options...
tpapik Posted March 10, 2013 Author Report Share Posted March 10, 2013 Racer- I have ahd about 30 EKG[s blood volume test Echo stress test. Halter monitors all came out normal- not sure if theres any other cardio tests to do. Quote Link to comment Share on other sites More sharing options...
tpapik Posted March 10, 2013 Author Report Share Posted March 10, 2013 and chest x rays x 3 and a chest cardiogram Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 10, 2013 Report Share Posted March 10, 2013 I have EDS which was diagnosed by a geneticist. A great place to learn about EDS and disorders often associated with it is ednf.org. Quote Link to comment Share on other sites More sharing options...
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