Anyone diagnosed with Mast Cell Activation Syndrome?

[Chancery]

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?

[Liz1234ty]

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.

[Chancery in reply to Liz1234ty]

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.

[Liz1234ty in reply to Chancery]

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.

[Chancery in reply to Liz1234ty]

Well, I hopefully will be referred to a specialist, if he can find one! I'll keep you posted, but with the NHS that means you may not hear from me for four years!