Hello all! Hope everyone is feeling well today I have a question. I was going over my lab work from two years ago with the autoimmune urticaria diagnosis. It looks like my trypas levels were normal on the test ( teu weren't flagged). Does this mean that masto is out of the question for me? Could you have normal trypas but still be diagnosed positive with a bone marrow test?

I was in a similar situation (normal tryptase with symptoms). They excluded other diseases and also ran heparin, PGD2, and urine N methylhistamine (there are others depending on which MCAS doc you see) looking for other mediator elevation that can help make the diagnosis of MCAS. With symptoms and response to meds we fulfill 2 of the currently proposed criteria for MCAS, ideally they like to have 3, but some of the experts still give it as a diagnosis with just 2 given how hard it can be to catch elevated mediators.

A few months ago when all of this was happening, the MCAS experts advised not having a BMB to me due to he low (albeit possible) likelihood of it being positive not warranting the risk of the procedure with my normal tryptase. Also because I was left with the differential diagnosis of MCAS vs slight possibility of indolent systemic masto for which the treatment is currently the same, they wanted to get me on a treatment that helped.  Some patients are adamant that they want to know which they are and ask to proceed with the BMB. It's a completely individual decision, but the MCAS docs advising me were so confident that it was easy to go with their recommendations.

This area is continually evolving and very subjective physician to physician, so ideally seeing and MCAS doc if you can would be the best move.  They will look at your individual situation and advise what is best.

If there's anything else you want to know about my experience that would help you just ask.

Good luck with your call! I don't know anything about that doc maybe others do. Let us know what he says.

With any procedure there are risks, yes the common ones infection, bleeding, pain, drug reactions and for us other reactions, anaphylaxis, symptom flares.  So procedures should only be done when its outcome will result in a theoretic benefit to the patient. That being said if you end up needing one there are ways to make them as safe as possible.

So I got my tryptase (sp?) results back this morning. They were normal 6.5 with a normal range being .4-10. What does this mean? Does this rule out MCAS or masto?? Still waiting on the c kit results. I probably won't get those until next week. I was just looking back, and Deborah wrote that I could have a normal tryptase. But mentioned something about a BMB? What is that? If I am going to try to get into BWH or Dr. Afrin, do I have to have an elevated tryptase?

Ok! I will charge ahead! What is a BMB?  

With a tryptase of 6.5 (mine is 6) and a diagnosis of chronic urticaria.....this is your mast cell disease diagnosis.  It is considered secondary mast cell disease.  

You have to have Dr. Castells review your bloodwork and she will let you know if she wishes to see you.