Ah, Ramona, I just realized why your 48 tryptase is NOT a big deal to them!! It was taken in a crisis event!!! Taking your tryptase during a crisis is NOT an indicator nor diagnostic of masto, it's diagnostic of ANAPHYLAXIS!! If your tryptase were that elevated at BASELINE, when you are not reacting, THEN, it would be something that raised their eyebrows!
How can I say this? Well, remember I was going to be doing a bone marrow study with Dr. Escribano for the MMAS diagnosis? Well, we've cancelled it due to my baseline tryptase. I was able to have it run recently and it came back only slightly elevated. It went from 4.0 to 4.2 in 3 years. My tryptase has never been taken during a crisis and I was not reacting when these measurements were taken. So, based upon this fact, Dr. Escribano has said that it makes absolutely no sense to do a bone marrow study for the number of mast cells present are just so rediculously low that the chances of finding any aberrant ones are against us. My case is going to remain open as exactly what form of masto I have. Again, we know the neoplasm is there due to the fact that it's casting a shadow and we are basing this understanding due to the shadow which it has cast. However, since my masto doesn't seem to be going anywhere and nothing really warrents the need to do another bone marrow biopsy, I'm going to have to be content and wait a few years and draw another baseline and see if it has risen any.
So, Ramona, you need to have Dr. Lottenburg do a drawing of your bone marrow as a baseline in order to know where those tryptase levels are in comparison to your proven anaphylaxis tryptase. Based upon your baseline is what may open the door to that masto study, otherwise, you will have to be content with the IA study for that is the only one you qualify for unless those skin biopsies can show something different.
I know you're disappointed, Ramona - I share your disppointment for I was wanting to also resolve my own case and be able to close the book. I had hope that we might perhaps be able gain more understanding on my reactions by pinpointing the diagnosis, but for now I must be satisfied and so must my doctors.
But you, sweety, are another case. You've yet to be fully investigated for this and for an entire year you've gone no where in getting answers and I've been watching your struggles just to get someone to even consider your case and it's left me as frustrated and anguished over this as it has you!!! So, I FULLY AGREE with you just going ahead and getting this resolved with Dr. Lottenburg cause this is WRONG the fact that you've not been able to get ANYWHERE with your case!!! Time to take it out of the NIH hands and get ANSWERS and if they want to catch up with you Mona, then fine, but otherwise, don't be wasting any more time waiting about!!!
Love ya!!! And remember, be vigilant!! anything can catch you!
ps - CONGRATULATIONS TO YOUR DAUGHTER!!! When is she doing med school now?!