It’s currently early October, 2016, and thanks to my catecholamines and other tests, I’ve found out that I have something called mast cell activation syndrome (MCAS). As of this writing I haven’t been able to find any MCAS doctors in Colorado. I originally started looking for allergists, but then I realized that Dr. Afrin is a hematologist, so I began looking for hematologists instead. After a while I also learned that I need to look for immunologists.
2019 Update: I found a possible MCAS doctor in Boulder, Colorado and another one in Denver. I have added both below.
Three possible MCAS doctors in Denver, CO
The website, MeAndMyMastCells.com has this list that shows that two doctors in Denver, Colorado may be qualified to work with mast cell activation disease — Dr. Richard Weber and Dr. Stephen Dreskin — but (a) I don’t know how those doctors got on that list, and (b) there are no comments under their names. (On his profile page, Dr. Dreskin lists mastocytosis as an interest, so I will check him out.) Other lists of mast cell disease doctors don’t list anyone in Colorado, so I’m a little skeptical about how those names go on that list atm.
Update 1: It’s now May, 2017, and I’ve seen Dr. Dreskin three times. In short, he’s been very helpful. He’s run all sorts of tests, started me on new medications, and helped adjust my medications each time I’ve seen him.
Update 2: It’s now March, 2020, and I’m told that Dr. Dreskin will be retiring soon.
Update 3: Dr. Jill R. Schofield of the Center for Multisystem Disease in Denver looks like another promising doctor.
A possible MCAS doctor in Boulder, Colorado
The last time I was at the ER, the doctor there knew about MCAS, which saved a lot of time during the introduction process. He told me that Dr. Karen Andrews in Boulder (who I assume is this Karen Andrews) knows about MCAS, and if I remember correctly he learned about it from her. I may see her at some point, but as of March, 2019, that’s all I know.
Older stuff: A good allergist
I have been able to confirm that Dr. Shoban Davé (an allergist) in Louisville, CO is aware of mastocytosis and also mast cell activation disease, but he told me that he could only go so far in his tests, confirming that I really needed to see a good hematologist who could take the tests further, and handle the potentially-necessary bone marrow biopsy. This is nothing bad about Dr. Davé; he was extremely helpful, and from reading Dr. Afrin’s book, I know that he started the correct tests (n-Methylhistamine and something called PDG2).
Older stuff: Found a hematologist, but ...
I did see a hematologist with Rocky Mountain Cancer Center in Boulder, CO last week, and he was also aware of mastocytosis, but didn’t know anything about mast cell activation disease. He seemed like a nice guy and I was hoping he might want to learn about MCAD with me as his volunteer test patient, but in the end he suggested that I see Dr. Afrin or someone else who is an MCAD/MCAS expert. One of the best things he suggested was having my hives tested for the presence of mast cells, but this is another problem, because the dermatologist can handle the biopsy, but needs to talk to a hematologist to find the correct tests to run on that biopsy to look for mast cells. (That test is listed in Dr. Afrin’s book, but I don’t remember the name of it, something like “CD117,” though I could be wrong.)
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