It really depends upon your symptoms regarding if you need a BMB. No need to get all upset, as you have UP, which is the skin form. It is the systemic form that can put one into shock, etc. I don't know the statistics of how likely it is to turn systemic. You certainly don't need to worry about it going cancerous. We do not have cancer. I remember the president of TMS saying something about that those who have mast cell leukemia have it from the start. They don't progress from ISM or UP to mast cell leukemia.

You know, Jared, Ramona's got a REALLY valid point here.  The truth is, you've been sick for a long, long time, you just never knew it.  Whatever was in that house, the mold, it was affecting your health every single day, 24 hours a day and it got to a point where your body just couldn't handle the constant triggering and it gave up the fight.  This is why the masto came out of hiding.  But it was there anyway and nothing you could do was going to change that.  Yes, it came out of hiding perhaps a lot sooner than it would have otherwise, but it was still there.  

Yet, this is really a very good thing because

1. it was already there.  Not having it come out of hiding means that there are vague symptoms that you can never really face or treat because without having a definite diagnosis, the doctors dont'know what to do with you and they can't do anything for you.   Now that you have pinpointed exactly what it is, they can treat you!!

2.  Damage is being done whether the disease is known or not.  You see, the mediators can do damage to your body as much as the invasion of the mast cells themselves.   There are some patients who haven't the slightest clue that they have masto and yet they'll have serious osteoporosis or go through anaphylaxis, like you are.  But until a doctor really takes the time to investigate it, or considers mastocytosis, the damage will continue going on for years until finally things get impossible to ignore!!   There are some patients, Jared, whose disease was only found after having gone into anaphylaxis during surgery or even only after death, during an autopsy!  Be grateful that your disease has been found in good time to prevent serious damage to your body!!!

Having a mast cell disorder, Jared is NOT the end of the world, nor the end of our youth, nor the end of our lives.  The great majority of us DO LIVE GOOD LIVES and this is because after our doctors finally know what they are working with they can medicate us properly and help us keep the disease under control.  Also, knowing what it is that you have, YOU YOURSELF can learn what you triggers are and how to avoid them and control your body.  Not knowing is much, much worse!!

Yet the major benefit here in knowing is that now you can learn what it is that has been making you so sick and you can REGAIN CONTROL over your body.  So much of your fear is from your ignorance as to what this disease is and what ti means in regards to your future.  Well, this is where we patients come in and that we can help you learn more about your disease so that you can lose some of those fears and concerns.

Trust me, Jared, finding out this diagnosis is a GOOD THING!!  We patients who know this disease can affirm for you that your masto is NOT AGGRESSIVE and that you are NOT going to die from this!!!   You have in truth only turned into a very allergic person - THAT'S ALL!!   And this is the TRUTH!!    Your tryptase is low, in the normal range and your CBCs are all clear and also in the normal ranges.  This means that your disease is NOT AGGRESSIVE and that your situation is in truth a really very, very good one!!   As long as you keep in tuned with you body, doing everything you can to keep your triggering down to a bare minimum, take your medications properly and be very kind to your body, you will not have to fear this disease turning aggressive some day!   You are really in a much better situation than many of us for when our diseases came out of hiding we were much older and we were being abusive to our bodies without having the slightest idea of it and we have incurred damage that had we known earlier, may not have happened.   I'm thinking of one patient I know who is a woman in her mid 50s and she's only now suspecting masto.  She has some serious osteoporosis going on in ther femurs, pelvis and spine and this is something that had they known about the masto earlier they could have prevented!!  

So, don't feel sorry for yourself, for your emotions are triggers and you must be careful with them.  However, in truth, your situation is not so horrible as you may think it is.  Masto is not the all destructive disease, even though it has it's "Dark Side".  It's not like a cancer, or lupus and it won't leave you disfigured and an invalid a prisoner of your home.  The great majority of us live very normal lives, only we must be more careful than the average person and think through things twice or so before we do anything.   Otherwise, we're pretty healthy and happy people.

So, be of good cheer, my friend, this is not the end of your life this diagnosis.  Instead, it is opening up a new door for you, one that you will see will help you live an even healthier life than you did before.  It will force you to think of your health whereas before you probably tended to be like the majority of us, people who didn't think twice what we asked our bodies to do and even abused our health thinking it would last forever.   Now you join our ranks, in that we are forced to LOVE OURSELVES that much more than we ever did before!!

I hope this helps you feel better and not so frightened!


Lisa