cardiactec Posted February 2, 2007 Report Share Posted February 2, 2007 I'm not really clued in as to what the specific testing is to determine between marfan or EDS.....it sounds like a good majority of testing for EDS is based off observation (doc looking at patient to see if patient has certain features or characteristics, etc). i know there are biopsies that are done to prove/disprove certain types of EDS, but what actually differentiates marfan from EDS? i know marfan is a type of connective tissue problem and usually people who have it have dilated aortic roots and such, but isnt the profile for marfan very similar if not almost the same for EDS AND marfan?I havent been tested for either, though i have had echos and i dont have any aortic dilatation, just MVP and TVP, and PFO.......today while i work, i was sitting with my arms straightened out on the table i was sitting on....one of the cardios looked at my arms and said "what are you doing with your arms". i had no clue what he was talking about and asked him what he meant. he said that they looked "Rotated" at the elbows....i didnt notice because i didnt feel i was "bending them out of shape" or anything....then he asked if i could rotate my elbows out or in more with my hand still straight on the table....so i tried and he just about flipped out, was trying to do it himself....i didnt think it was THAT abnormal.....then he tried to show me something with his thumb, trying to ask if i could lay my thumb on my wrist. i did it no problem and he said "you have marfans"......i told him that i didnt. he asked if i had had an echo and i said that i had but didnt have any aortic root problems.......then he said "oh well then you definitely have EDS, do you know what that is". i told him i had heard about it and then he rememberd my pots and said there was a correlation btwn pots or dysaut and connective tissue disease and that someone should run some tests on me........the question is, is the only determiner btwn marfan and EDS, aortic root dilatation? i know with EDS you can have vessel and/or small/large organ rupture if vessels are involved..........but are there any specific blood tests, genetic tests that put EDS in one box and marfan in another??? or do they just wait til your aorta is dilated to say you have marfan. lol. the reason i ask is my mom, though not hypermobile in any way, has a dilated aorta and they are just blaming it on high BP (but her BP isnt that high, like 150 systolic). i am wondering if there is marfan going on?? i have had my eyes checked, cuz i know with marfan, you can have eye problems, my eyes are fine. no aortic dilatation.........sorry this is so long! i was just shocked the cardio had this convo with me today!!! Quote Link to comment Share on other sites More sharing options...
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