Annie,

you say- There's a lot of info out there, but who's pulling it all together?

with the risk of sounding like an arrogant physician- I am.

even since, my neuro, at that time told me very bluntly-

that patients and their families have no insight into their illness (he actually said: " you know that from your own practice", and I was quite embarrassed to admit that I was so ignorant and thought differently until he enlightened me about it). And obviously even relatively inexperienced residents, that have the self-confidence of dictators, have much better judgment, then a patient, or his family members.

and I realized that he was right that I didn't not know much about this illness. in fact I know nearly nothing, and just put my trust in those that I thought did.

I just told my neuro ( he belongs to those expectional ones you talked about. he thinks like a physician, not like a neurologist, and I can't understand how he became one, but fotunately for me and the rest of his seronegative patients he did), that I can't understand how a world leading expert neurologist, in Mayo, tells me that he does't know how albuterol works in CMS, when at the same time a group from his own hospital shows it very clearly in a study done in their lab. ( they were not intersted in CMS, and possibly didn't know much about it, but just in the way it effects the contraction of the diaphragm in asthma. )

he said that he understands perfectly well, knowing his colleagues. ( of course he wouldn't dare say it to them).

alice