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Hello All, I am doing research to find a clinic that will accept patients without a bone marrow biopsy. My allergist and I tried the Brigham Hospital in MA, but they were super unhelpful in the process of getting in. Even the staff wouldn't talk with my doc! Its such a frustrating process to get in where there is experienced people who really can speak on this disorder. Does anyone have suggestions of places they have tried or tactics in speaking with specialized places? What does Mayo offer in terms of this?
Replies to "Hello All, I am doing research to find a clinic that will accept patients without a..."
Unfortunately a lot of the specialists are being overwhelmed by patients who think they have mast cell disorder, many of whom may. This is part of what is making them set strict and often seemingly unreasonable limitations. Have you checked out Facebook groups for mast cell activation many patients are willing to message each other there or on insight with recommendations what to do next. Doctor Afrin switched to conscierge so he’s only out of pocket and thus out of the price range of many. Mayo does have a mast cell clinic but getting in can be tricky and they currently seem to be focused primarily on mastocytosis
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@kedening I am not clear on why they would not help you, are you opposed to a bone marrow biopsy? I am a transplant patient so I know nothing about "mast cell activation", but if you feel there is no need for that biopsy perhaps another hospital would be more accepting of a patient who has not done that. My hospital of choice is Mass General (I presume you are in the New England area). They have been wonderful and at this point I have been to many doctors there rather than the doctors in my own area because I don't find them to be helpful or as knowledgeable.
JK