Dear Tears,  

Welcome to our forum.  I sure do hope we can help you and also give you some HOPE for some answers.  

I'm sorry about taking so long to see your post, I've been pretty busy and I know that with Summertime, everybody gets a bit busy with travelling and such.  Sorry.

I'm sorry you've grown up so miserable with allergies and the such.  It's really not an easy thing and I can't imagine having lived like that as a child - everything must have been prohibited.a

But tell me, are these really IgE mediated allergies?  Have you been through any IgE testing?   It can help figure your case out.   You see, masto patients do indeed have alleregies like anybody else can, but those of us who have reactions without the IgE mediated allergies end up pointing to illness since true allergies are not the issue.  

As to doctors, Dr. Schwartz is indeed an excellent doctor.  He's an authority in masto and will do what he can to find answers for you.   You may also want to consider going to Dr. Frank Lichtenberg who is in North Carolina as well as Dr. Lawrence Afrin who is in South Carolina.   These doctors know mast cell disorders and will also investigate for other things which might compete with the MCD.  

You see, Tears, one of the problems we patients face is that when we are in the initial stages of an investigation, if the doctors don't know mast cell disorders well enough, they will look for systemic mastocytosis only and unfortunately, in ruling that out they think that there's no possibility for a mast cell disorder cause they don't know about it.   So, if you were to go to any one of these 3 doctors you'd be investigated for other possibilities.   If you are from the Washington DC region, then although Dr. Schwartz is closest, he may not be the quickest to see.   You might want to write to Dr. Lichtenberg, who has recently left the NIH and is opening up his practice in N. Carolina.  It's not much further from Richmond and being fresh from the NIH, he's going to have the energy to do a thorough investigation.   I would consider writing to these doctors and see how they respond to you and then consider which of them you'd like to see, this may be the way to go.  

I hope this helps!!

Lisa

Just wanted to let you know you are not alone, I have been past the verge and into the tears.  When the mast cells are messed up they can certainly mess with your emotions, then you get a snowball effect. I am waiting on an appointment too.  I think the gals have given you good advice in finding the right doc! Good luck
Pam