Hi Tracy and Jesslynn!
I am very interested in what you both have to share – but as a poster I have no administrative knowledge. I am sure Dr. D will be along and try to fix whatever bug is causing the problem. Being ill herself and so busy helping so many, it may take a bit of time before she pops in.
In the meantime, do try to post your stories in segments (copy whatever you type so you don’t lose the whole post into cyberspace!).
Tracy, I just saw another one of your posts regarding diamox on the ednf forum that listed your symptoms. Gosh, you sound so much like my daughter! I replied to the other post you wrote, but when I saw you here again, I just had to comment. That constellation of symptoms seems so obvious to me, wish it were as obvious to the docs!
I believe that there will soon be a body of knowledge regarding elevated brain pressure causing neurological symptoms in EDS patients and a real treatment option. We just have to get the docs to see it!
Anyway, hope you both take another chance and post more! Welcome!