- CASE FILE
I have episodes of angioedema, profuse sweating, stomach cramps, and have gone into anaphylaxis. Not an allergy and no known cause.
ABOUT THIS CASE FILE
I have been searching for answers since 1987. I have episodes of angioedema, profuse sweating, stomach cramps, and have gone into anaphylaxis. I have been to multiple specialists, and no allergy seems to be triggering it. My tryptase levels were 4-5 normally and during a slight episode on Thanksgiving, it was at 12.8. I have had a bone marrow biopsy looking for mast cells and nothing was found. The only abnormal results are my chromogranin A, low platelets, and tryptase. I also have Raynaud’s, pain in joints and muscles. I tested positive on my ANA and RF in 2014 but now test negative. I had approximately 8-10 episodes from 1987-1990, disappeared for 22 years and have had around 8 since 2012 with the worst episode in 2014. Since Thanksgiving, I have had three episodes and have to take an epipen. No one can identify what is causing me to do this. I have been to Cleveland Clinic, Immunologist, Oncologist, Rheumatologist, Allergy and Asthma specialists and what was thought at one time to be Hereditary Angioedema was proven wrong by tests. I need help!!!! I am scared every time I get that certain stomach cramp and I know what's coming. I truly thought in 2014 I was going to die because of it. My 9 year old found me blue in the floor and had the neighbor call the ambulance.