Hi Everyone,

My name is Annie and I thank you so much for being here, all of you.  I have been reading secretly the forum to help me understand my symptoms and condition.  I've been through a lot of testing during the last year.  The first dermatologist who saw me while flushing suspected masto.  I felt that I was lucky because everything made sense, all my symptoms where just starting and my GP (who saw me for the first time after that while flushing) was very receptive of the masto diagnosis, and he is the one who takes care of me.  He was also able to see all my complaints for the last 4 years or so, related in one single diagnosis.

I've been tested with skin biopsy (a very little evidence of mast cells, the dermato thinks I may have TMEP), no involvment in bone marrow, no carcinoid syndrome (pet scan, 5HIAA negative, colonoscopy and endoscopy done two weeks ago), tryptase at 14,4 a year ago and now at 12,8).  I had severe anemia that was treated with iron IV and pre-medication for it (these treatments brought heavy reactions).  I feel  better since iron level is ok and started cromoglycate sodium at the same time, this was a revelation!

A few months ago, I have been a study case for a bunch of dermatologists and students  and they all (20 of them) agreed that I should probably better seeking for carcinoid, they thought my flushing is probably rosacea! lol!!!  My hemato thinks there is something going on with the mast cells, he likes the idea of MCAS.  My GP decided to prescribe mast cell stabilizer after I seeked for help with DR Castells by e-mail and she suggested a try for three months.  Of course, I have anti-h1-h2 also.

As the treatment makes sense, this confirm the diagnosis, that looks like the way it goes for me.  I feel like I am still undiagnosed, even if I have all the symptoms and the treatment that goes with it.  I flush easily, I react to food, scents and noises.  I experienced a lot of pain during the last few years and thought it was gluten related, so I felt a relief with gluten free diet until the flushing started.  There were so many symptoms that I forgot how I was feeling back then (memory loss is a symptom!!!).  A lot of tiredness after an attack, some attacks bring intense dizziness. I rarely have a day without flushing.  The GI symptoms are less since I started Nalcrom.  On my skin, I would say that I have some kind of spots but all dermatologists denied them as part of the problem.  My hormonal cycle brings also reactions.  I've never experienced anaphylaxis, but sometimes I felt horrible  (like after Iron IV treatment and endoscopy) where  I almost passed out, vomit or have trouble breathing ; these where always delayed reactions.  

I think that the hardest part is dealing with people's comments or "diagnosis".  Almost everybody has a word or an hypothesis about how I feel  ,  like if everybody as a PH.D. in medecine!    Oh! how about : "I know how you feel, I had that a few times"  or " I've never heard of that diagnosis, are you sure it exists?" LOL!!!

So, that's it for today folks,  have a nice week!

Annie