I am 43 and first noticed spots on my arms about twelve years ago. These increased very gradually at first and were not recognised by a variety of GPs. I eventually asked for a referral to a dermatologist at my local hospital and was lucky enough to see someone who was able to diagnose UP straight away. She wrote urticaria pigmentosa on a piece of paper and handed it to me and said it was nothing to worry about. I did not worry about it for five years or so even though the spots were increasing. I did not link a few strange turns, mostly during the night, or my aching legs and hips to the diagnosis.
One day in 2003 I decided to type those words that the consultant had written into Google! I got a bit of a shock and actually made myself quite poorly for a few weeks with anxiety, not so much over the symptoms but more over the apparent rarity of this disease. I thought how alone I was. I did manage to recover from the initial shock and visit a few more dermatologists who monitored my condition. Last year my tryptase level was raised and I was referred to a haematologist who I still see.
Apart from the strange night time attacks, where I wake with a racing heart, bright red and panicking, aching legs and swollen joints on my fingers I am well. I do not take regular medication but take Claritin [loratadine] for hay fever and if my skin starts reacting to heat or being bitten.
I did persuade my haematologist to prescribe an epi-pen a few months ago and he thinks it likely that I have some systemic involvement. I am also going to another hospital for a consultation soon and will also be having a bone marrow biopsy to confirm the diagnosis of SM.
[urticaria pigmentosa, UP, skin spots, tryptase, adult]