I am a mother of 2 grown up children and was widowed in 2007. After several years with what looked like freckles increasing on my legs I started to suffer from several different unusual symptoms, the worst being excruciating pain in my feet. I would go backwards and forwards to the GP with what seemed to be very trivial things with no explanation as to why, these included flushing during the night (I thought I was going through early menopause), headaches, bone pain, breathlessness and really bad fatigue, waking up after a good night’s sleep and forcing myself out of bed, nearly falling asleep at work in the afternoons. I was really lucky that during a scan on my gall bladder something was noticed on my spine and I was sent to Neurology.
The neurologist at the hospital took a great interest in the rash on my legs, (which I had never had checked out because it didn’t worry me), sending me to dermatology at another hospital. He biopsied the rash and UP [urticaria pigmentosa] was diagnosed. He decided to take a blood test testing my tryptase levels resulting in a very scary letter asking me to attend a Cancer and Haematology unit. The consultant believed I was just suffering from UP but decided to send me for a bone marrow biopsy to rule out SM [systemic mastocytosis]. The results came in, I was diagnosed with Indolent Systemic Mastocytosis, given all the medication and since then I’ve just had my second DEXA scan. My first scan diagnosed Osteopenia so I am on meds for that condition too. I still manage to work as a teaching assistant, school crossing patrol, senior lunchtime supervisor and after school club assistant as well as being a governor. I have found that exercise causes me to get very breathless. I have never suffered anaphylaxis but perfumes really make me feel ill. I was so happy to find this group at the beginning of my diagnosis so have been very thankful for all the support received from this group over the years.
[urticaria pigmentosa, UP, skin rash, fatigue, bone pain, ISM, indolent systemic mastocytosis, DEXA scan, osteopenia, flushing, bone marrow biopsy, reaction to perfume, adult]