Anyone ever diagnosed with Mast Cell Activation Syndrome?

[Chancery]

Last night I discovered Mast Cell Activation Syndrome which seems to fit my current collection of weird symptoms (everything from flushing to reflux to oedema) really well. 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 regarding it being taken seriously?

[KLauri]

Hi Chancery,

I have no actual experience with Mast Cell issues. But... my daughter just had blood work done yesterday. We were finally able to get her in to see an allergist / immunologist on Monday after going to two different doctors because she is having chronic hives, other skin issues (that look kind of like psoriasis) and headaches. He ordered blood work and some of the results will or will not indicate Mast Cell problems. He didn’t say to me that he was trying to rule that out but when I researched the tests I found info about Mast Cell Activation Syndrome.

I know that’s not really helpful but I’ll come back if we get any pertinent information.

[Chancery in reply to KLauri]

Thank you very much, Klauri, I appreciate that - I'd very much like to hear how you get on. I'm seeing my doc tomorrow and am still very conflicted about bringing it up at all. I hate going to see them with a potential diagnosis because I'm sure the first thing they think is "Another nutter who's been googling strange illnesses". But with the NHS in the UK (you are perhaps in the US?) you only get 10 mins to discuss your problem so giving them a diagnosis rather than trotting out lots of symptoms is often the best way to go!

[KLauri in reply to Chancery]

We are in Connecticut, US. Often times we only get 10 minutes with a doc as well. : (

I understand what you are saying about being to look like a nutter when talking to a doctor. I had Lyme Disease in 1993. Although not unheard of because I live 30 minutes from Lyme CT (LOL Lucky Me); Lyme disease wasn’t really understood in 1993. It was not fun dealing with doctors back then. My Right ankle would swell up & then it would go down. Then my Left ankle would swell up & four days later that ankle would go down. The first doc I went to said that I must have sprained my ankle and didn’t realize it. ??! 🙄

Some doctors are ridiculous. Do you know this physician well? Maybe don’t mention that you were “googling” and found info about Mast cell disorders. You could say that you someone with similar symptoms and they are being tested & treated for mast cell issues.

good luck tomorrow!!

[Chancery in reply to KLauri]

I shall be a combination of Miss Tactful and a magcician and simply not mention how I heard of it at all, diving straight in and hopefully distracting him from where I saw it. I do have the advantage that even I don't know how I stumbled across it! I THINK I was Googling oedema and it somehow came up, although I don't know how since I've been frantically Googling oedema for the last month, trying to find ANY other diagnosis than heart failure, which is what I first thought the problem was, and still may be, although that wouldn't account for the rashes, burning, flushing and severe gastric upset.

Anyway, thank you again for answering me. There's very little on HU about the disorder and no forum. There doesn't even appear to be one for Mastocytosis, the more 'mainstream version' of the condition. Please do let me know how you get on.