Ok, so I am getting a little nervous that 18 people have read my symptoms and have not responded. I watched the videos but am am not as familiar with some of the terms/abbreviations so I posted my symptoms in hopes someone could tell me what kind of Dr I need to see. My Rheummy doesn’t know how to treat me, my cardiologist has never heard of it, my orthopedic surgeon is afraid to do surgery on me, I’m his first EDS patient. Am I in the right place? I see a geneticist in October, does he treat all of these sumptoms? No one has ever talked to me about EDS. I’m on my own… Well except I have the Lord and a really awesome husband. 😉
Never feel black-balled about posting your thoughts and experiences. Many times I read a post and either don’t have the energy (or have too much other work to do!) to respond, it doesn’t mean I wouldn’t like to respond, it’s just my condition and circumstances that let me down.
I think it is important that all symptoms are exposed and yes, many of them are weird! People will ‘search the internet’ for their symptoms for years to come and read these posts and it does help to find you are not alone.