Hi LaVerne,

Welcome to our COMPLICATED family, I'm sure you'll find yourself amongst friends who TOTALLY understand exactly what you are saying!   If I had a dollar for every time I've had a doctor say, "Well, I've never seen that before" I'd be taking 1st class trips around the world!!!

LaVerne, mastocytosis is the only disease which will give an elevated tryptase when you are not in a crisis.  If it's elevated while in a crisis, then that's anaphylaxis.  Mast Cell Disorders are complex because the mast cell is a key cell of our immune defense and it's found throughout the body.  We can't live without it for it's a major defender of invading germs, etc.  We need it, but when it goes haywire, it wrecks havoc throughout the body, thus the fact that everything goes haywire with it!  This is why so many of us have complex cases for our bodies create reactions in many diverse ways that doctors who don't know about mast cell disorders can't put the pieces of the puzzle together.  

Your doctor is to be commended for having put them together!!!  He's a keeper, LaVerne!

As to your situation, if your doctor can keep masto in mind, he will begin to see things come together.  However, the problem is that he may not know of the larger, newly encompasing diagnosis of MCAD, mast cell activation disorder.  Not all of us are classic Systemic Mastocytosis (SM) cases and we fall outside of this very restrictive diagnosis.  This larger diagnosis encompasses autoimmune patients as well as some of the other forms of mast cell disorder activity.   Your doctor needs updated information, and if you will send me a PM with your email address, I'll be more than happy to send you some of the recent information on this diagnosis and you doctor can use this to help him fit some of the pieces of the puzzle together.  

I'm also sure that once you begin to be properly medicated, you will find that your symptoms will improve.  It could be that there is also something else going wrong with you beside the mast cell disorder, however, the fact that you do have mastocytosis is indeed indicated by the elevated tryptase levels.  

As to the UN of Unknown, I think you can finally give a sigh of relief, for I'd say your doctor has finally found it.  I am sorry, LaVerne, that you are sick, but I must say that be thankful that it's masto and not some other horrible illness like Lupus or something worse like Cancer.  None of us like being sick, but for the great majority of us, masto in truth is really nothing more than a huge inconvenience in that it has made us horrendously allergic people.  I, personally, am thankful that it's masto and not something worse!!  If I had to get sick, at least it was with something relatively mild, one that I can learn to live with.  And this is why we all are hear, helping one another to learn to live with our disease and to gain victories over it!

I hope this helps!

Lisa