Hi. I was diagnosed with Mastocytosis 6 years ago at the age of 38. I had been experiencing symptoms such as itching, rash, dizzyness and intestinal problems for a couple of years previously. Unfortunately it was at my last doctor's visit before I lost my insurance. I experienced terrible rashes over the next few years & didn't know that I should be attributing them to this disease. I would cry and practicly rip my skin off.
When I finally did get insurance again...and a knowledgable doctor, we went through all of the usual antihistamine treatments. They work for a while but then I have major breakouts again. I've notice many people who have this have red spots that generally go away?! I have white ones, especially around my ankles, that are raised and never go away. They are usually the first things to start itching when an attack comes on.
One thing I think is very important for masto patients to know is that surgery can be very dangerous for us. Be sure that your anesthesiologist knows about your condition. We have a higher risk of our blood pressure dropping to dangerous levels than people without this condition. There are all sorts of other risks during surgery as well. DO YOUR RESEARCH before having surgery. I had to be administered epinephrine during my last surgery and life saving procedures were performed.
For more about surgery check out http://www.tmsforacure.org/research/index.shtml
This condition sucks. I have no idea how I got it but I sure as heck would like to get back to a "normal" life where a hike in the woods doesn't send me into shock.
HI KELLY - WE ARE LOOKING TO TRANSFER THIS COMMUNITY TO MASTOPEDIA.COM - if you could please join as alias "Kelly" and repost this over on the new site as a blog post, I know people would really find it helpful.