I couldn't think where to ask this so thought I'd try here (and the coeliac forum), since the condition has gut and rash issues attached. Because of problems I've been having recently, I suspected I might have heart failure. I've made an appointment with my doc for this Thurs, but last night I discovered Mast Cell Activation Syndrome and my current symptoms fit it even better than heart failure. Unfortunately it's not, currently, a broadly accepted diagnosis with doctors, which makes me very anxious about broaching it, but I wondered if anyone has ever had it or been diagnosed with it and how you got on with docs vis a vis it being taken seriously?
Anyone diagnosed with Mast Cell Activation Syn... - IBS Network
Anyone diagnosed with Mast Cell Activation Syndrome?
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Hi chancery - good luck with the doc appointment. Hope it goes well as its obviously an anxious time. A canadian doc has posted about this syndrome on the ibs forum. Look up posts by "notibs" or type mast cell activation into the search button and it should come up.
Hi Liz, appointment went okay - he didn't laugh at me and he's going to refer me, although I don't have much faith that the NHS will be able to provide anyone very up-to-date on the condition - I was informed "we don't have an immunologist". This is in Edinburgh, Scotland's capital! Thank you for the tip about notibs - I'm having a look through her posts right now.
I am glad you have at least been referred to a specialist. My gp - in england - often tries to block seeing a specialist. Let me know how you get on.