just wanted to say Hi,

wasn't sure how to introduce myself.

if I write about the entire four years or possibly much more, I have been dealing with this illness, it would be a book. ( I am actually in the process of trying to write one).

so I decided to just say the bottom line-

I have a rare form of myasthenic sydrome.

after a fairly long diagnostic process, multiple therapuetic trials, which can all be summarized in a few words- quite an ordeal, I believe I have learned to live with it, reasonably well.

I now have a pretty good team of physicians-pulmonoloigsts, rehab physician, occupational physician, endocrinologist and even a reasonable neurologist.

the md in my name is MD, but not neuro.

my motivation to join your group was to think together about ways in which we can improve the managment of MG patients, worldwide.

because I personally think that there is quite a lot to do....

alice