I sent Dr. Afrin an email regarding my having SM and out of control symptoms and asked him what regular blood tests to run and what my doctor should be looking for now.  He wrote back that he is not a specialist in Systemic Mastocytosis but he does know alot about MCAS and he does not know how to treat SM.  Darn it, but he did recommend doctors at MD Anderson (Dr. Verstovsek who I had during the Gleevec trials) a doctor at Mayo, Standford and a few others.  Well I will see what the new HEM/ONC I am seeing next week says before I contact any of the others.  But I was glad that he got back to me the same day.  So I guess there must be quite a difference between MCAS and Systemic Mastocytosis.

Wendy