Hi all !!

I am new here and haven't had the chance to properly introduce myself, I've been too sick : (  I will definitely do so when I am feeling a bit better...but I do have a quick question for you guys.

I am currently in the hospital and they are trying to get this awful edema ( result of constantly triggering angioedema ) under control. I have to lose 100 pounds!!  Anyway, while I am here my awesome Nephrologist is trying to do some remaining tests that would help Dr Castells narrow down which Mast Cell Disorder I have ( tummy biopsy, bone marrow biopsy, testing for something called c-kitt (???) and some other blood tests.

So my question :

 Yesterday I had my tummy biopsy and my parents said that when I came out of the procedure room I was intensely bright red from head to toe. They said it's the worst they have seen me flush...

1. Do you think I may have been triggered by the anesthesia ?

2. Or do you think  I could possibly have been triggered because they were messing with my stomach ? ( my stomach seems to usually trigger a reaction ( flushing, angioedema ) no matter what is put in it. )

I am a little worried because I have to get another procedure on Monday.

Respectfully,

xoxo Jamie and Sable

Hi Jamie ,

I agree with Lisa .

Ckit , is a codon on the gene that is known to be mutated in mastocytosis . So the presence of the mutation points direction . But . Pateients who ahve tested negative for mastoctois according to the world health organisation criteria have been found to have the genetic mutation .

These patients have the diagnosis of mast cell activation syndrome .

There are other criteria but the presence of the mutation is a key component .

I have to be premedicated for any procedure. Some ansethetic agents are less likley to activate mast cells but this risk is present with all . The mastocytosis society has guides for pre- medication and anethetic agents . if you cant find them pm me your email address and I will email them to you .

I hope you are now getting the lasix ( water tablets in IV form ) you need . You will lose potassium with the majority so a close eye on your potassium is vital . Your magnesium will also need watching as they are closely linked  .

many thoughts

Josie