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Replies to "I'm from Duluth MN as well. Saw your news tribune article as well. But like you..."
Hi Patrick - I am from Duluth! I have been having symptoms of mast cell disease, like anaphylactic reaction, what I thought were food allergies, digestive problems, weakness, fatigue, heat rashes/sensitivity, body rashes, etc. for years with no answers as to why.
After I had my last episode, I went into my PCP and thought I needed to get allergy testing done. I was referred to Dr. Alaaddin Kandeel in the Essentia Health allergy department. After I explained my symptoms and different reactions, Dr. Kandeel told me about Mast Cell Disease. He took his time to explain the disease to me. It was the first appointment I’ve had where I felt the doctor really listened to what I had to say and answer every question I had. He did not make me feel rushed at all. He had blood tests done for me that day. He then had me do the 24 hour urine test, and I am scheduled for a bone marrow biopsy. I highly recommend Dr. Kandeel at Essentia Health. Take care!
I am moving to the Twin Cities shortly and am hoping to find a doctor at the Mayo. Any suggestions are appreciated for Mayo doctors that specialize in mast cell! Thanks!
Please, keep us posted on your results and dr recommendations. This is an extremely miserable whole body issue!
You might find more help by checking into the mast cell disorder groups and discussions on the insight webpage. Or ask the mastocytosis society at tmsforacure.org