Louby Posted March 22, 2004 Report Share Posted March 22, 2004 Hello,in a couple of weeks I am off to see a new rheumatology professor. It seems I may have EDS type 3. I am also quite wary of researching too much on the internet, prior to a diagnose or speaking to experts - I don't want to scare myself half to death, however it does seem highly likely that I have this as well as POTS.I have noticed from the boards, that a great number of people on the boards also seem to suffer with the different strains of EDS, so I am curious to find out from the experts (I believe that is what we are) what kind of tests do they do on you, and any ideas where I can look to find out a bit more info without frightening myself half to death.Thanks everyone in advanceLouby Quote Link to comment Share on other sites More sharing options...
briarrose Posted March 22, 2004 Report Share Posted March 22, 2004 I was told that I have EDS type III. There is no test for it. They can check you for hypermobility. I'm too tired right now to look up all of the links, will have to add later today/tonight.http://ghr.nlm.nih.gov/ghr/disease/ehlersd...4BA233AFB482B6Bhttp://www.hypermobility.org/http://www.ehlers-danlos.org/Info%20Sheets/infoEDS.htmhttp://www.familyvillage.wisc.edu/lib_e-ds.htm Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted March 22, 2004 Report Share Posted March 22, 2004 Hi Louby,I've been diagnosed with classical EDS (which includes types 1 & 2). Type 3 is one of the best types of EDS to have, if you have to have it. The only thing that seems to be worrisome to my doctor about my EDS is possible dilation of the ascending aorta. I had an ultrasound that showed everything is in good working order. I really don't worry about EDS at all. I look at it this way: This is something I've had since birth. I've lived with it this long, why worry now? You might want to get in touch with the people at www.ednf.org. They can probably send you some info that will put your mind at ease.Michelle Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 22, 2004 Report Share Posted March 22, 2004 Hi Louby,I was diagnosed with EDS III , the hypermobile type. Of all this group of disorders, as Michelle said, it's the easiest to manage. Mostly, I just have to be careful to keep my joints strong so that they are stable. The worst things that could happen are dislocations--which in the grand scheme, don't seem all that awful to me. At least dislocations are fixable things...not like this POTS/NCS stuff, which bothers me more on a day to day basis.The only test the doc did was to check and see how much range of motion I have a key joints. Didin't hurt a bit! Nina Quote Link to comment Share on other sites More sharing options...
Louby Posted March 22, 2004 Author Report Share Posted March 22, 2004 Thanks everyone, I am just learning about the whole EDS thing, so will take a look at the links.The proffesor hinted at EDS III - i am incredibly flexiable, but i have also been having really bad pains in my joints, and find my feet claw etc. He mentioned that the new proff may want to send me for some tests... i guess i shall wait and seeI am trying not to worry too much, i can deal with POTS ( i can deal with anything)Thanks everyoneLouby Quote Link to comment Share on other sites More sharing options...
Louby Posted March 24, 2004 Author Report Share Posted March 24, 2004 Hi michelle,I have downloaded all of the documents from the site, so when i come of my meds next week, i shall have lots to read!Thank you very muchLouby Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted March 24, 2004 Report Share Posted March 24, 2004 Your welcome, Louby. Glad I could help.Michelle Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.