daisy Posted May 29, 2010 Report Share Posted May 29, 2010 For those of you interested in learning more about mast cell activation disorder or mastocytosis, this video is fabulous - created by the mastocytosis society and has the top docs talking about the disorders. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 29, 2010 Report Share Posted May 29, 2010 It is wonderful and Dr. Castells is my doctor. I last saw her while my mother was actively dying and I was so spaced out, plus I had over a 3 hour wait with my family all in the car. I was so ill sitting in the office I told them I had to leave and they let me lay down. My tests results all came back fine except typtase was right up there and now I have to be watched. She asked me if my allergies bother me right now and foolishly I said no. Well hello, allergra 24/7 and the next day everything hit me. That's OK I can tell her the real story now that I know what they are really looking for as I have all those symptoms. I used to have to go to the er all the time for allergic reactions and the docs found it fascinating to draw on my back and watch the welts appear. She did mention something about I could get leukemia or brain fog I can't remember... I think it was lymphoma. I was worked up for that once before for about 6 months. Who knows what I had back then.Anyway, I really wish that the CHANGES video could be put on you tube. We really need the awareness. It would make life so much easier for all of us or maybe I'll just make my own with my own doc as they call me the delicate flower and don't like anyone else messing with my meds and today I'm a wilting flower after missing a good watering this past week and another Monday.So thank you daisy for posting this as when I found it via Google looking up typtase and a facebook page came up. I thought I must remember to post this when I come back from numbsville. I'm back but I'm still numb. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted May 29, 2010 Report Share Posted May 29, 2010 Thank you for posting. The doctor I am going to be seeing next week just mentioned mast cells to me and to tell you the truth I didn't have a clue towhat he was talking about....bee stings, allergies....my allergic reaction to florinef...etc Now, it is making sense. Again thank you. Quote Link to comment Share on other sites More sharing options...
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