I went to my first mast cell disorder consult appointment this week with Dr. Phil Lieberman in Memphis. He is a specialist in Anaphylaxis. He was very nice and took his time with me reviewing my medical records. I am going to have the following tests next week to rule out a neuroendocrine tumor: Substance P; Neurokinin A; Pancreastatin; Vasoactive Intestinal Polypeptide (VIP); Chromogranin A; 24 hour urines for N-methylhistamines and Protaglandin D2.

He started me on Ketotifen 1 mg twice daily and gave me a prescription for Gastrocrom 200 mg four times daily if the Ketotifen is not helpful. He did say that I may need to go to the Mast Cell Center in Boston if I do not improve on these medications. I took Ketotifen 0.5 mg (1/2 tablet) last night. I am more dizzy this morning but did not have oversedation last night.

I already take Allegra 180 mg, Zantac 150 mg and Singulair 10 mg in the morning.  I take Zyrtec 10 mg and Zantac 150 mg in the evening.  
I am keeping my fingers crossed that I get some benefits from the Ketotifen. I am flushing daily with headaches, reactions to foods/odors, etc. Dr. Lieberman said that I may end up with a diagnosis of Idiopathic Anaphylaxis since my bone marrow biopsy was normal. But that he would have done three bone marrow biopsies from three different sites to be complete.

Terry

Looks like your getting somewhere Albymom. I hope you don't have to go to Boston. I think you mentioned once that you get sick traveling.
Isn't Ketotifen the one you have to get from Canada? I can't remember right now.