Mastocytosis or mast cell activation Syndrome? I usually just go with Mast cell activation disorder.

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I was fist diagnosised with systemic mastocytoisis. A few years later and several medicines added to control my disease I saw a different doctor that was not certain of the first diagnosis. She wanted me to have a bone marrow biopsy to confirm.  Three bone marrow biopsies were done, unfortunately they were "dry". So we were not able to confirm. I was told to reseldule for another one. I hesitiate because it will not change my treatment in any way. Also a smart woman told me. I could have it done and it could be positive for SM or I could have it done and it could be negative for SM and I could still have SM. So for now I go with mast cell disorder...that was not one of the options here!

I am on a low histamine, low salicylate and no dairy diet. I am on Cromolyn, Ketotifen, Singulair, Allegra, Zantac, Dexilant and prednisone daily. The foods I miss most...Pizza and Ice cream! The foods that have caused anaphylaxis...Pizza and Ice Cream. Funny how that works!

It has been a really rough 5 years.  I have lost my job, my friends, my ablility to go where I want, when I want...but I have gained a new friends and an appriciation of the small things in life.  I would not wish this disease on my worst enemy. It is unpredictable and controlling. It has knocked me down at the knees and at the same time made me stong.