Experiences with

Cutaneous mastocytosis

I was diagnosed with Cutaneous Mastocytosis this year. I’ve always had a few spots on my legs but nothing to write home about. Covid came (serious dose) and my spots got worse and didn’t leave. Again only on my legs.

my C-kit results is negative and my tryptase is higher than the last test but still normal so likely only cutaneous Mastocytosis, however I know that 20% of people have a negative C-kit with systemic involvement so am wavering on the biopsy.

hi, I am new to this group, I have only recently been diagnosed with cutaneous mastocytosis, it’s taken nearly 12 years to get that. I’m still learning about it and it would be nice to connect with others that deal with this aswell 😊

Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.

Diagnosed in Nov 2019 with cutaneous mastocytosis, dermatologist said it's unlikely to progress, but over the past few month have had increasing reactions and now I'm reacting to all foods and any strong smells and am unable to work. Any help or advice would be much appreciated