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 am only going to take 1/2 tablet at night for a week to see if I have any side effects.

I am currently taking Allegra 180 mg, Zantac 150 mg, 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