Getting to know.....Gawain

After years of IBS type symptoms that came and went and then bizarre breathing symptoms, in April 2012, i suffered a one-off event - an extreme episode of wrenching lower abdominal pain and nausea. Three months later, I started experiencing episodic sensations across the day, consisting in sensations of heat and/or movement, expansion and contraction in my abdomen.

The daily episodes deteriorated until I could no longer work or participate in daily life. A neuroendocrinology professor undertook a structured investigation of my symptoms, acting as a hub, referring me to other specialists.

After every test imaginable (including tropical diseases) i started to suspect Mastocytosis. The tests came back negative but in the meantime I had become aware of MCAS. The professor said he would read all the literature on the subject he was able to find. He then diagnosed me with MCAS. Unfortunately he could find no one in the UK to help advise on treatment and optimise my medications.