Questions About Ehlers-Danlos Syndrome?

[mysteryhealthcase]

Hi there, I'm not sure yet if I have EDS or not, but I'm having a hard time finding support forums and places on the internet where I can talk to other people with EDS. However I'm very glad that I found this support forum. My skin bruises extremely easy and I have a huge problem with stretch marks. I haven't gained weight or had any of the issues that usually come with getting stretch marks. I am seeing an Endocrinologist at this point to rule out pituitary issues and cushings disease, but I can't find a good doctor to see about getting a diagnosis or ruling out EDS. In the past I have been to a lot of doctors and had some really bad experiences that have made going to a new doctor a total nightmare. On top of that I have developed severe PTSD due to the loss of my signifigant other. So I know that I NEED TO FIND A GREAT DOCTOR OR SPECIALIST TO DIAGNOS OR RULE OUT EDS BECAUSE I JUST CAN'T DEAL WITH GOING TO SOMEONE WHO SAYS THAT THEY CAN'T FIGURE OUT WHATS WRONG WITH ME OR THAT THEY DON'T KNOW WHAT I HAVE. So I guess I'm asking WHERE IS THE BEST PLACE OR DOCTOR TO GO TO WHO REALLY KNOWS A LOT ABOUT EDS AND WHERE ELSE ON THE INTERNET CAN I GO THAT HAS A FORUM AND OR PLACE TO CHAT WITH PEOPLE WITH EDS? SORRY ABOUT ALL THE CAPS.

[selmaS]

  Hi and welcome to the EDS group.

First u can look at the videos that r linked in the top thread, they r by a Dr that also has EDS, she explains the diff types of EDS as well as symptoms...enzymelover gave u 2 names of Drs, I am familiar with Dr Francamano....she is one of the top EDS drs here on the east coast that I am aware of.....

If u have ne other questions , please ask.

[enzymelover]

Oh. And also Dr. Alan Pocinki, in Washington D. C.  What part of the country are you in?

[enzymelover]

Hi!  If you are anywhere near the East Coast, you should try to see Dr. Clair Francomano in Baltimore, and there is Dr. Brad Tinkle in Cincinnati. He's a pediatrician, but sees adults for EDS diagnosis.  These are the top two, that I know of.
There is tons and tons of information on the Ehlers-Danlos National Foundation Support Community on the inspire ******* website.  Hundreds of members, very eager to share information and stories.