This May will be 3 yrs. ago my journey w/ Masto started . I started w/ severe , crippling lower right sided abdominal pain. I have already had an appendecotmy, and we ruled out 1 by 1 any gyn or urology issues. At that point my GI Dr. ordered a colonoscopy, endoscopy and stomach biopsy. 2 weeks after all this I started w/ the hives, swollen eyes, and lipsand anaphalaxis. My BP dropped to like 60/40, and I collapsed. I was in every ER in my County looking for answers? Every day for 10 days.

I heard things like your allergic to Motrin, your allergic to soap, to your clothes detergent??? I was infuriated to say the least. I should probably also mention I am a two time brain tumor survivor, epileptic, and I have Lupus. So I take ALOT of medicine and I know my body better than anyone. I am allergic to just about every medicine, my Dr's have ever tried me on first . Fo example , after brain surgery I had a stroke and had to be on blood thinners. Immed. allergic reaction, all seizure meds on the market ex. for the 2 I have been taking for 16 yrs. At one point my alleric reactions got soo bad I had to see an Infection Control Specialist. I had almost burn like hives on my skin, I am also allergic to almost every anti-biotic there is.

After my CT Dr.'s could not figure me out I was referred to Dr. Hamilos at MGH, in Boston, there we played the lets spend thousands of $$$ on tests game. Only to be ignored for 18 mths. Yes, I said 18 mths. of hell, I had horrible stomach pain . Kept having swellngs. hives. All the Dr. in CT would say is do more blood work?? My serum tryptase even during an attack is a 3?? This is the HUGE piece of the puzzle and why I am finally going to see Dr. Castells at Brigham & Womans... Finally at my demanding and reporting to the hosp. Med Director at MGH, I got my results in Nov 2010.My GI biopsies from 2008 had shown and unbelievable amount of Mast Cells, everywhere stomach, colon, sigmoid, large, small intestine, terminal illeum, stump appendix,  if its GI related it had tons of MAst Cells in it. From there, I had to see a Dr. in CT at Smilow Cancer Hospital ( a division of Yale).He wasnt convinced even w/ positive GI biopsy that I had MAsto he too was hung up on serum tryptase be soo low. I am also doing chemo for my Lupus, I have never done anything medically correct so to speak. I have not been tested for carcinoid syndrome, and starting to think I should be. Ilearned ysterday that I am spilling over large amounts of protein in my urine. I cant eat anything w/oout paying the price dearly w/ crippling stomach pain. I take hydroxazine, Allegra, Rinitadine, and drink 8 vials of Gastrocrom daily. My ins. Co. wants to stop paying for Gastrocrom because it is soo expensive w/out ins. its $5000 a mth....I am 37 and the mother of 4, my husband is recovering from a spinal cord injury, so as  you can imagine, I am not in a position to just sit around ad not try to get answers.

Thanks for any advice ...

Hello mommyx and WELCOME to the board!!
Im so sorry youve been through so much.. I know it sucks, but youve been smart and done right , plus you will soon see THE experts on mast cell disorders. Lisas advice is so good! Shes brilliant   I just wanted to let you know we are on your side here and you arent alone anymore
Hugs
Ramona