My Symptoms

I wanted to share my symptoms, since everyone experiences this disease in different ways. First of all, I have Systemic Mastocytosis with the c-kit mutation D816V. I both shock and leak.

About 10 years ago, my husband and I were traveling from Texas to Michigan. It was a warm summer day, and we were pushing ourselves to go as far as possible so that we would make the trip in 2 days, and not have to stay in a motel.

The second day of our trip, we had eaten breakfast over an hour before, and were driving through rural Illinois. All of the sudden I had a very urgent need to use the bathroom. I had a lot of cramping and thought I was going to have an accident. My husband pulled over at the next gas station and I ran into the restroom.

I got into the restroom and started going when I suddenly became very hot, had tunnel vision and became dizzy. The next thing I remember was laying on the floor and I had the sensation that I was floating up and out of my body. Someone asked me who I was with and I weakly told the woman that my husband was in the car. I again became unconscious.

The next thing I remember was this awful smell, and a man yelling my name in my ear, trying to get a response. I wanted him to leave me alone. He continued putting the smelling salts under my nose and insisting that I respond to him. When I came to, I was laying in a pool of diarrhea. The two paramedics and my husband attempted to clean me off and put me on a stretcher and took me to the ambulance.

In the ambulance, the other paramedic, who happened to be his wife, attempted to take my blood pressure and could not get a reading. She then attempted to put in an I.V., but could not get a vein to put it in.

At the hospital, they did a cat scan and tested for me to see if I had had a heart attack. When they found nothing wrong, the doctor concluded that I got dizzy from the diarrhea. She gave me some immodium, and sent me on my way.

That was the first of many full scale attacks I have experienced. I have been tested for many different diseases and syndromes. It wasn't until February of 2008, that my episode included full body hives, that my husband and I made a connection that I was having some kind of allergic reaction, which turned out to be anaphylaxis.

When I am in the midst of an anaphylactic episode, I may have all or some of the following symptoms: massive diarrhea, abdominal cramping, a feeling of doom, tunnel vision, white noise in my ears, vomiting, inability to breathe, sweating, heat intolerance, hives, itchy skin, wanting to remove jewelry and clothing, irritability, very low blood pressure, dizziness and passing out.

When I am "leaking" I may have the following symptoms: pain in my thigh bones, upper arm bones and sometimes my breastbone, itchiness, irritability, stomach cramps, stomach feels raw inside, extreme fatigue, hives, post nasal drip, low blood pressure and a general feeling of yuckiness. My leaking sometimes leads to an anaphylaxis episode, but not always.

To combat all these symptoms I take xyzal, xyflo, allegra, pepcid, gastrocrom and flonase. When I am having an episode, I take benedryl and epinephrine. I shock so often that to cut down on drug costs, I have learned to give myself injections. I carry a bottle of epinephrine and syringes to give myself injections. I carry the epipen for times that I am too far gone or not able to go someplace that is private.

I hope this helps some of you out there that are looking for answers, or wondering if others have experienced the same things. Mastocytosis is a humiliating disease.