Hi Borci,  Welcome to our forum!!

I'm sorry I didn't get on here earlier and say Hi - I've been really busy and also suffer with my daily fun with masto too.  

Borci, I'm an American, but I live in Brazil.  We don't have any masto authorities in Brazil either, so I know how you feel!   Where are you in Europe?  I may know of some doctors who are near you.  Are you in Italy by chance?  Let me know and I'll see if I can get you a contact near you.

As to your tryptase levels, they're really not bad!!  They are elevated, but they're still pretty low.  There are some patients who get up into the hundreds and they've got real issues once they get up that high.  So, don't be too worried, in the 30s is good!!!

As to the Midostaurin, from all I know, Borci, they won't consider ANY of us who are indolent for this medication - you've got to be an aggressive masto patient for this.  I know that you would love as much as any of us to be free from this disease, but Midostaurin is still too experimental for those of us with the indolent form of the disease, Borci.  There are side affects which could possibly cause more problems then help for we can't do without our mast cells, even though some are neoplastic in nature.  Fortunately, the majority of us are not really "sick" enough to need this kind of intervention.  

One thing you may not know about masto, Borci - the symptoms have nothing to do with how the disease is progressing within your body.  There are some aggressive masto patients who never knew they had masto!  The activity we go through isn't correlated with how sick the body is, or more like, how much damage the mast cells are causing within your body.  The neoplastic mast cells are indeed invading tissues, mainly the bone marrow, but that tissue invasion is what does the real damage in this disease - all of the symptoms you have is a separate issue and there are some masto patients who have TONS of activity and yet their tryptase levels are normal or very low.  This is why they work for us to be on the Antihistamines and Singulair(Montelukast) and Ketotifen (Cetotifeno) because these are what help us feel better.   What medications are you taking, Borci, perhaps your meds need adjusting to help you feel better.  

Let me know where you live and let's see if we can find you some experts near you!

I hope this helps!

Lisa