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Mast Cell Activation

Blood Cancers & Disorders | Last Active: Nov 25, 2023 | Replies (117)

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@dolan

@danmlee: I am sorry you feel this way but let me tell you I have felt that exact way and still do off and on. I was diagnosed with Systemic Mastocytosis 11 years ago. I went thru a week of tests: bone marrow biopsy, 24 hr urine, labs of all kinds. Saw bone doctor, hematologist and then Dr. Butterfield (all at Mayo). I was on Interferon for 3 years (giving myself shots 3 times a week). I had nearly every side effect they listed. I still struggle from fatigue and depression. I've had numerous broken bones (bones of a 90 yr old)...and in recent years been seen as indolent. It seems I am riding the effects of the Interferon after having a adverse reaction to PegIntron (a one shot a week med) and have been off any prescription medication for Masto since. I do a lab kit sent to me from Mayo every 6 months. I do a 24 hr urine and have blood vials drawn and it's dry iced to Mayo from Fargo(ND). As long as the numbers are as Dr. Butterfield sees fit I will continue in this manner. I am on aspirin. I flush, I have restless leg, I have off and on adverse reactions to various foods and temperatures. I am low in iron(I do not store iron)so am on a lot of iron and calcium...which is hard on my digestive track. Winters are by far the hardest on me with less daylight and cold temperatures. I use a lightbox to help with fatigue and depression usually starting in Oct to April. I have been frustrated with this disease but I know that many suffer much more than I. Am need to feel grateful with the indolent role. Welcome here.

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Replies to "@danmlee: I am sorry you feel this way but let me tell you I have felt..."

Thanks for sharing your story. I was diagnosed with Cutaneous Mastocytosis 5 years ago. I have so many symptoms of systemic such as headaches, chest pains, flushing, abdominal pain, allergies to hot and cold, etc. They have yet to diagnose it as systemic because most doctors I see don't know what tests to run. I tried getting into Mayo so that they can run tests and diagnose me but internal medicine rejected me. How did you get into Mayo for them to run tests and get a diagnosis? Always a frustration with this disease when so many know so little about it, so hoping Mayo will reconsider my request since they seem to be the only ones who know at least some information on how to treat the symptoms of this disease. Any advice is helpful.