CrystalG
Tutor
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If you are at peace, you are living in the present
Posts: 63
Maine
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I am a 27 year old female and have been struggling and suffering for the past year with something that has been termed so many things. It started out as being diagnosed as "IBS," then it was idiopathic urticaria and angioedema, then it was idiopathic anaphylaxis, then it was systemic mastocytosis, and now it's a "very severe" autoimmune mast cell disease. My journey started a year ago when I found myself in the ER with excruciating intestinal pain, bloody stool, nausea, etc. I was told it was maybe salmonella and sent home. The following 4 months I had anaphylaxis once a month and finally I had another severe intestinal episode where I was hospitalized and the CT showed colitis. I had a GI follow up and was told I had IBS. That same month I was in the ER every week with random analhylaxis, fainting, etc. For 4 months after that I continued to go to the ER each week with random anaphylaxis and/or severe intestinal episodes. I have seen 12 different doctors and am currently on 21 different medications including: Clarinex, Advair, Singulair, Zyrtec, Veramyst, gastrocom, prednisone, xolair injections, ranitidine, Benadryl, etc. Since starting the prednisone and gastrocom every day about 6 weeks ago I have only had 3 "attacks." I have run into a road block with my doctors at the Lahey clinic in MA. My immunologist there (i've been to several) states that i have an autoimmune mast cell disease that is very severe and that my intestinal episodes are not related to my random anaphylaxis so he cant help me with my intestinal pain. when I ask my GI Doc there how it can't be related, he has no idea what's wrong with my intestines or if it's related. In the meantime I continue to suffer from excruciating intestinal pain, hives daily, fainting several times a day, joint pain, muscle pain, fatigue, etc. I have been told by several people that I need to go to Dr. Castells at Brigham and Woman's, but my immunologist at Lahey Clinic said in order to get into Brigham and Woman's I need a pos bone marrow biopsy and mine was negative. If anyone has any ideas or anything that would be of help, I would very much appreciate it. I can't work, can't be outside at all during the day because the sun sends me into an attack, I can't live my life at all.
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