Story about Mastocytosis and MCAS , Polycystic Ovary Syndrome.

Dying to know

Sep 30, 2017

By: Dana

Year Condition Began: 2013


I have always had little quirks about me, like my serious distaste for leftovers. During the pregnancy of my last child I began to get what I thought was frequently poisoned by foods or the flu. After her birth, it continued to get worse until I was unable to get out of bed. Vertigo, vomiting, diarrhea, incontinence, severe head pain, chills. Tests revealed nothing. I was told it was panic attacks.
Nearly 2 years later after having a sip of beer, I felt so sick I thought I was going to die. At the ER, for the millionth time that year but in a different county because we were out in a day trip, the doctor suggested allergy. I made an appointment with an allergist and during skin prick testing I started feeling that "food poisoning" feeling. It feels like that, plus car sickness, plus the drunk spins. The doctor immediately used an epi pen on me and announced I was in anaphylaxis. The epi pen worked!!! I felt better!
For another year we had food trials and nothing helped to find out the cause of my anaphylaxis. At this point I was down to 5 foods and spices and still having weekly anaphylaxic episodes. My diagnoses was left at "idiopathic anaphylaxis".
I couldnt just leave it at that and never have the answer. That is when my ongoing research led me to MCAS. The doctor did some testing and confirmed it. I haven't had to use my epipen in over a year! I still am balancing having flare-up, but Xolair and my other medications have allowed me to have my life back.

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