I want to add these doctors to this post.
I just came back from UC Davis, where I saw two doctors who know about mast cell disorders, and I know there are at least three more. I originally found them by doing a search on doctors, mastocytosis, and California. Several of these doctors participated in a paper called
Mastocytosis, the Great Masquerader (
http://www.ncbi.nlm.nih.gov/pubmed/16461996) and
Contemporary Challenges in Mastocytosis (
http://www.ncbi.nlm.nih.gov/pubmed/19639428).
I was supposed to see Dr. Eric Gershwin, who is one of the authors on these papers. For some reason, he was not in, but I saw Dr. Fatima Ali, who is an intern, and another doctor who was supervising, and only ran in briefly.
Anyway, Dr. Ali was VERY friendly, interested, and seemed quite knowledgeable. She talked to me a lot about what medications I am taking, and much more about how much I could safely take, and what concerns there might be. She went over the use of the Epipen much more thoroughly, not so much HOW, though she did do that, but also when. As I am a leaker (don't often have anaphylaxis), I have been very confused about when I should use it.
She knew about the new WHO criteria, and also about the proposed MCAD criteria, though they are not as big into the MCAD there. Doesn't mean they wouldn't treat necessarily, just they called my issue idiopathic for now. They were very emphatic that I do need treatment! Also, that even with my lower tryptase, that I need a bone marrow biopsy, as my GI biopsy shows signs, but the report was not clear enough to give an absolute diagnosis.
So, the doctors at UC Davis who know enough about masto to be involved in research are
M. Eric Gershwin (
http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=297&searc... ),
Rosemary Hallet (
http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=881&searchtype=&... ),
Suzanne Teuber (
http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=474&searc...), and the internist I saw,
Fatima Ali (Allergy and Immunology).
The local PNW support group also gave me the name of
Natalyia Kushnir in Berkeley. (
http://www.allergynk.com/index.html ). I did write to her to ask if she knows about MCAD, after calling the clinic and talking with their reception. The receptionist told me to email the doctor, and even gave me her email, but I never heard back from her. I may try again, as she is slightly closer than UC Davis, for me.
The docs at UC suggested I find a local hematologist, and talk to them about doing the bone marrow biopsy, so I woudl not have to travel. They even think a hematologist would know enough to be able to follow my treatment. I will have to see if that is true. However, they are well set up to do the testing at UC Davis, and would have me back if that is what I choose. There is also Dr. Gotlieb at Stanford, if I got an actual diagnosis based on the bone marrow biopsy.