Stuart’s Story

I just turned 40 this year. I have had the spots for as long as I can remember, which isn’t very long sometimes, but have only had the other symptoms for a few months. Last year I went to my GP as I had an upset stomach nearly every day for a few months. She then gave me a cursory examination that brought up my fact that my spleen was a lot larger than it should have been. She did remark upon my spots but did not seem to dwell on it or pick up on their significance at all. I then went through various scans and a load of blood tests that just showed that my kidneys, liver etc were working OK. I was then referred to a gastroenterologist, who did more blood tests and an examination and discussed other problems that I had that I thought were unrelated. He then told me that he would arrange for more scans. I then received a letter telling me that I had systemic mastocytosis and after a full skeletal x-ray, which I had last week, he would have me in to discuss treatment. All that I know of the disorder is what I can find on the net so at this time I am quite overwhelmed with it all. My symptoms are – stomach disorders including cramps, diarrhoea etc., dizzy spells with brain fog, bone ache, flushes, itchiness when hot or especially when going from hot to cold.

[systemic mastocytosis, SM, gastrointestinal symptoms, brain fog, flushing, reaction to temperature change, adult]