From what I understand, Dr. Metcalfe is one who only truly believes in the SM form of masto being the only real form. I've heard comments saying that he doesn't really believe in it and doesn't accept the MCAS diagnosis even though he was part of the consensus committee to oficialize this diagnosis.
There are two camps of thought out there, the MCAS and the SM groups. They are at a loggerheads over this for the one insists that the other doesnt' exist. This is why it's got us patients caught in the middle!!
I can't argue the details because I'm no doctor, but it may be that depending upon where the genetic defect is, the one form may develop into a clonal disease whereas the other is a malfunctioning disease. But only time and research will say the truth.
However, this is why his reply was the way it was for he doesn't approve,. from all I've heard, of the MCAS diagnosis. They've not yet been able to "prove" the activation form whereas the clonal form they can. Doctors and scientists go on PROOF! and rightly so. But it's hard to deny that with some of us you can't find the proof and yet we still go through misery!! From all I know, depending upon the genetic defect, the form of the MC disorder will be different.
Avonlea, definitely go to Dr. Castells! However, I think that both you and Julie should try checking out this doctor for in order to work with Dr. Castells you need to have a local doctor. It might turn out that he's worth trying.
Speak with Patricia, ladies. She's already working with Dr. Wilson at the NIH and knows the ropes within the region. You three should start up a MC support group in the area!! Pat's got a restaurant and it would be a great place to gather!!!
The next time I'm up in the region, it would be great fun to meet you all!!!!!!!!
Lisa