Splenic bleed related to MCAS
Has anyone had a spontaneous splenic bleed as a result of MCAS? I’ve been suffering with symptoms of MCAS for 7 years now with no diagnosis, surprise surprise! Most of my symptoms are gastrointestinal with some affect on my chest and sinuses, and sometimes rashes or hives. Mostly in response to foods or hormonal changes. I had my first splenic bleed in Feb 2023, and the next recorded one was June 2026, I was severely unwell with the first one however they never found the cause and sent me on my way saying it could basically never happen again; the one in 2026 was not as bad however I think there’s a large possibility I could have had more, unrecorded.
I’m just wondering if this has happened to anyone else with MCAS? I have wondered about the possibility of systemic mastocytosis, however the only time my tryptase was measured it was at 5.5 so it’s unlikely.
I’ve been passed around departments at hospitals with no luck, I’m waiting to see allergy and immunology, which is the most likely team to yield some results, but whilst I wait I thought I’d ask the people of Reddit…