Jean’s Story

I am Jean, aged 41 and have systemic mastocytosis, as well as diabetes and an underactive thyroid. I’m married and have 2 children aged 18 and 15.

In 1998 I woke during the night with severe flushing of my face neck and arms, itchy palms, racing, pounding heart, head feeling like it wanted to explode and obviously feeling very unwell. My husband took me down to A&E, where they did lots of tests, but were unable to find anything wrong. After these attacks I feel very sleepy, it takes a couple of days to recover. I also get itchy bumpy legs if I go walking in cold weather and the more I scratch the worse it gets, making me feel dizzy and sick. This is connected to the masto, although I don’t have further skin involvement.

Over the next 8 years, these attacks would happen, sometimes every 2 weeks, sometimes nothing for months and months. Sometimes they are so severe I pass out and struggle to breathe, I shake uncontrollably as the attacks pass off. I saw numerous consultants and was diagnosed with various complaints, including abdominal migraine and panic disorder. No matter how hard I tried I could not get these doctors to believe I was not having panic attacks! Although my GPs all thought something was being missed.

After a particularly bad attack, where I needed an ambulance, a paramedic said he thought I might be suffering from anaphylactic shock. A&E didn’t think so! On returning home I searched the internet, desperate to find out what was wrong with me. The symptoms of anaphylactic shock were spot on for me, but I couldn’t find what I was allergic to. I’d cut out red wine years ago, as I was sure that triggered one. I then found one cause of anaphylaxis to be mastocytosis!

I phoned my doctor, who looked on the internet too and immediately thought I was on the right lines. She did a tryptase blood test, which showed high levels. Then I saw an immunologist who arranged for me to have a bone marrow biopsy, yuk! This confirmed systemic mastocytosis. AT LAST I knew what was wrong. I take Nalcrom [sodium cromoglicate], ranitidine, fexofenadine, epi pen. I’ve been very well for a year now, but after 3 bad attacks recently, my immunologist has referred me to a haematologist and my medication is being reassessed. I keep clear of known triggers, all alcohol, spicy food, caffeine and hot drinks.

[systemic mastocytosis, SM, anaphylaxis, tryptase, bone marrow biopsy, flushing, alcohol intolerance, food intolerance, adult]