Everyone tells me that the cardiologist I see is the best heart doctor in Boulder, Colorado, so on Thursday we were talking and I was telling him that it looks like I was born with a rare blood disease named mast cell activation syndrome (MCAS), and said, “So maybe that fake heart attack I had last May may have been allergic angina, you know, Kounis Syndrome. If we had known about MCAS at that time I might not have needed that angiogram, yada yada yada.” Then he said, “Wait, what was the name of that disease?”
At first I was upset that he didn’t know what this was, but then I realized how rare mast cell disease is. Statistically there are only 26 other people in Colorado with this disease, and if I was still in Alaska there would only be three or four of us. (FWIW, this is the same doctor who knew what a Pheochromocytoma is, and told me to get to the Mayo Clinic asap when my bloodwork made doctors think that I had a Pheo.)
The good news is that I was able to give him all of the information I have on mast cell disease and Kounis Syndrome, so hopefully in the future he can try giving patients who present unusually some Benadryl and see if that helps. (I started to write, “Give them Benadryl instead of an angiogram,” but the stress test showed a possible dead spot in my heart, so I was getting that angiogram one way or another.)
(This image comes from the book, Never Bet Against Occam: Mast Cell Activation Disease.)
