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Mast Cell Activation

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

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@slarson18

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.

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Replies to "Thanks for sharing your story. I was diagnosed with Cutaneous Mastocytosis 5 years ago. I have..."

Hello @slarson18, I would like to add my welcome to Connect along with @pamandrewsrn and @smbryce1. @smbryce1 shared some good resources for information on mast cell activation. Here are the links in case you missed them.

- The Mast Cell Disease Society: https://tmsforacure.org/
- Mast Attack - Educating people about life with mast cell disorders: https://www.mastattack.org/

Treatments from first website above - https://tmsforacure.org/treatments-2/

You mentioned trying to get an appointment at Mayo Clinic through internal medicine but it was rejected. Have you tried going directly to the website for the condition and clicking the Request an Appointment button or asking your doctor for a referral?

- Systemic mastocytosis care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/care-at-mayo-clinic/mac-20352862