Re: Mastocytosis or Urticaria Pigmentosa

dankachron_at_yahoo.com
Date: 12/10/04 

Date: 9 Dec 2004 17:10:46 -0800

I was told that i have mastocytosis in April of '03. I had complained
of sysmptoms for years and was always told by doctors that i was out of
shape (fatigue and seeing "stars") and that my "red dots" were caused
by a natural flushing from excessive physical activity. In early '02 i
noticed these dots everywhere on my upper legs, torso, and arms. I
went to the doctor for flu sysmptoms in late '02 and he sent me to a
dermotologist because of the abundance of red dots on my torso. The
doctors at Kaiser ran tests (bone marrow, and skin biopsy) and
confermed that I had Mastocytosis. They gave me Doxepin and told me
that I was in stage 2? the medication didn't seem to help for either
my skin or stomach. It seemed the more I asked about my condition the
more put off the doctors were. I was probably over emotional about my
assesment, however to date, I still have no idea what state I am in.
Can you offer any help?
For as long as I can remember, I have always seen "stars" when over
exzerting myself. Most recently, I was playing basketball at the gym
last weekend (granted I am out of shape) and after about 10 or 15
minutes I began to see "stars" became tingly and numb all over and my
perifrial view was completely gone. It all went away in about 5
minutes ( i stopped playing imediately).
Last night I was reading on the web, mastocytosis.com had noted that
people with mastocytosis should carry shots of adrenaline on them and
wear an i.d. bracelet. Is this really that serious? and if so, why
did I not hear this from my doctors?
Please tell me I have an overactive imagination....
Any info you can provide would be much appreciated.
Thanks!