andybonse Posted August 24, 2013 Report Share Posted August 24, 2013 Hello,My Neuro said I have type 3 eds, I was shocked as I dont seem that bendy but they know their stuff!I am worried if I have that, how would I know if I have vascular type also? Getting rather worried about it now Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 24, 2013 Report Share Posted August 24, 2013 Andy,There is a genetic test for the vascular type eds. A great resource for eds information is www.ednf.org. Ehlers Dan s National Foundation. It's a website similar to this but for eds. They also have a forum called Inspire. Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 24, 2013 Report Share Posted August 24, 2013 How did they diagnose you with EDS? Just wondering, because I am not bendy at all either. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 25, 2013 Report Share Posted August 25, 2013 There are many other features to EDS besides just hyper mobility. The best place to read up on the different types of EDS and how each type is diagnosed is at the Ehlers Danlos National Foundation website. Each type has different diagnostic qualifications and there is overlap between the types. Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 25, 2013 Author Report Share Posted August 25, 2013 (edited) I've just gone through some of the stuff, I dont have the translucent skin with lots of veins on chest, abodomen etc no facial features.My skin doesn't have extensive bruising from minor trauma, I think I need to stop reading into stuff too much, My doc would of probs said if they thought I had it . Ah well Ill stick with eds type 3 lol.Andy I've removed your link as it didn't work,Corina Edited August 25, 2013 by corina Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 25, 2013 Report Share Posted August 25, 2013 From what I understand the vascular type is much more rare. Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 25, 2013 Report Share Posted August 25, 2013 Yes, but you are your own advocate. I have spent so much time researching things....I never knew so many conditions are out there. Quote Link to comment Share on other sites More sharing options...
issie Posted August 25, 2013 Report Share Posted August 25, 2013 Now Andy, you need to figure out if you have the trilogy that goes along with POTS and EDS. Many of us with these two things also have MCAS. When we started being treated for that ---things have improved. Issie Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 27, 2013 Author Report Share Posted August 27, 2013 I do indeed have mcad with it!Lol Quote Link to comment Share on other sites More sharing options...
imre Posted August 28, 2013 Report Share Posted August 28, 2013 Issie what do you treat mcas with? Quote Link to comment Share on other sites More sharing options...
imre Posted August 28, 2013 Report Share Posted August 28, 2013 Nvm, just realized you already answered this question on an older post. Quote Link to comment Share on other sites More sharing options...
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