Originally Posted by SylvieM

Dear David,

Nice to see your presence here, although as you and I know, it would great to be able to move on entirely.

I'm very ambivalent about a center. I recently applied to, and was accepted to the Cleveland Clinic (did you know you have to apply? Unfortunately no fellowships). My insurance will cover 80% (that's the first application hurdle....they contact your insurance). Then I figure it will cost several thousand dollars. So I'm mulling over whether it would be worth it. I'm not sure. I just would like one great neurologist to quarterback.

So, for now I'm seeing Glenntag' s neuro, who doesn't take my insurance, to see where that goes. He's thorough, but I wish he was a more creative thinker. I did get him to agree to test for cytokines, but he only tested for one....negative. Next up is a lumbar puncture....to see if it can shed light on a so far undetected AI issue.

Yet, you seem to be a better candidate than I for a more multidisciplinary approach, based on your other issues. Perhaps you can arrange to see En Bloc's doctor at Hopkins (Julius Birnbaum) and have his office suggest a gastroenterologist while you are there? It may be good to be assured you are seeing one excellent doc who happens to cross disciplines, and add another, rather than seeing a group of unknowns.

Just a thought.

(PS..I've also abandoned the MCAS route....testing is too tricky and treatment too vague...and I just don't think I have enough symptoms.)

I'm eager to see what others say and what you decide...

Best,
S