NMPotsie Posted September 28, 2012 Report Share Posted September 28, 2012 Just got back from Mayo Scottsdale and saw an allergist there, Dr. Rank. He's new to AZ but was at Rochester prior to that. Anyway, he is an awesome doctor. I described the issues I was having and the first thing he does is start drawing a picture and says "this is a mast cell. Let me explain what I think is going on..."He ordered tryptase, IgE (both high, though tryptase only slightly), and a bunch of other tests that i'm still waiting for the results of, but between him and Dr. Goodman they decided I likely have Mast cell disorder and said they would treat it as such because the tests aren't very useful unless you catch your body after an episode (pretty quickly). Goodman was very receptive and explained the issue further. They also said the high bp episodes may be triggered by the mast cells, so treating it will hopefully get rid of them so that he can treat me for the low bp that has been a huge problem lately. They are also hopeful that the infections I've had are attributable to this issue and will subside once I am on treatment. Apparently mast cells can actually worsen the immune system's response to bacterial infections.I was diagnosed with heat, cold, and vibration-induced urticaria, eczema (common for mc issues), and was allergic to everything they put on me in skin tests. I am awaiting the treatment plan after the tests are all back. He is also going to try me on allergy shots for some of my worst allergens and see how they go (we'll stop if I get anaphylactic). Anyway, just wanted to share with anyone who goes to Mayo AZ that Dr. Rank is awesome and if you are concerned about mast cells it's worth a visit with him. If nothing else, he can help with allergies. Quote Link to comment Share on other sites More sharing options...
issie Posted September 28, 2012 Report Share Posted September 28, 2012 So good, to have a good report of this new doc. Sounds like treatments are evolving and things are being tried. I hope it helps you. Keep us posted.Issie Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted September 28, 2012 Report Share Posted September 28, 2012 Oh my gosh, so great!! Can I ask, did you already have a BMB or do they want you to have one?I had a bad experience with allergy at Rochester, but in their defense I was only ever seen by fellows. They wouldn't discuss any treatment or options unless I had a BMB and I was so sick and flaring so hugely I knew a procedure would make me so much worse and I couldn't understand what it would change acutely. Anyway. . .I am so so glad that he has an open mind and is going to take good care of you! Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted September 28, 2012 Author Report Share Posted September 28, 2012 What's a BMB? Sorry, I'm unfamiliar with that term. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted September 28, 2012 Report Share Posted September 28, 2012 BMB = bone marrow biopsy Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted September 28, 2012 Author Report Share Posted September 28, 2012 Oh, okay. No, I didn't have that. I just explained my symptoms and history and Dr. Rank went right to mast cells as the probable cause. I have a history of atopic dermatitis since I was 15, which he said was common with this issue. Additionally, I get random anaphylaxis that isn't clearly tied to any particular allergen. I had 3 ER visits/records in which a cause couldn't be pinpointed, so this was also a clue for him I guess. Both he and my neuro said it makes sense considering my flares, bloodwork, and symptoms. They only ordered blood and urine tests, and even then said the tests may be inconclusive because it's very hard to identify. Quote Link to comment Share on other sites More sharing options...
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