Hi Brian!!

Welcome to the forum.  I´m so glad you are finding some help and information here!!  That´s great!!

I´m sorry to hear that you´ve got a MC disorder, but it´s wonderful that your doctors have finally figured out what is going on with you and that you are getting some treatment.  You will see that with the proper meds, you can live a pretty normal life and feel oh so much better.    Yet, getting your meds right is not easy and you´ve got to have patience and keep working with your doctors till they get it right.

It´s also important that you keep reading and studying for the more you understand about the triggers and how to keep them in check and what to do when they get going, will help you to keep yourself stable and out of the ER.  There are loads of things which activate the MC and knowing what they are will help you avoid reacting.   The less reacting you do, the more stable you remain and therefore, healthier and safer.  

It sounds to me like you are a shocker, so you need to have an epi-pen with you in case of an emergency.  You also need to have a small case with emergency antihistamines and some prednisone with you at all times so that if any serious reacting hits you then you may be able to counteract it without haveing to use the Epi.  This is what I do and it´s been very effective.  Yet, there are times when things hit us and even though you can use the antihistamines as a pre-medication, they still won´t head off the reacting and you must step in with the epi-pen, so being aware of all of this is important so that you no longer feel so out of control of your body.     By talking with us and going over some of your situations we can help you see how to step in and attack the situation in order to avoid those trips to the ER as well as improve your stability.

I hope that you can find a specialist, Brian, but they are even more rare than we are and you may have to travel outside of your region to find someone who can fully diagnose you.   Getting the diagnosis for your local doctors is very important, but getting them to give you that diagnosis is next to impossible.   They need it in order to know how to deal with you in an emergency, however, once they have it, the rest is relatively easy and they will work with you as they do any other patient most of the time.   So, if you can´t get a specialist in your area, then consider going up the line to some of the experts for you will save yourself a lot of time and frustration and even money insisting to find someone in your area.   Only those masto patients who have classic SM cases find their diagnosis easily.  Some doctors know how to diagnose SM because it´s a diagnosis which has been well established for a while now, but it´s the MCAS diagnosis which is brand new and only a very, very few doctors really know what to do for diagnostic purposes.  Thankfully, treating our disease is the same as SM so we luck out with that situation.  

As to being worried about the future, DON´T BE!!   Having a MC disorder is not a death sentence it´s really a matter of living a normal life span with a disease which only makes you extremely allergic.   Yep, it´s a pain in the neck disease to put it bluntly, but thankfully the vast majority of us don´t have anything more life threatening than that, just being a walking allergy!      So, be at peace, Brian, and don´t worry too much about what the literature talks about in aggressive disease for very few of us have that form of mastocytosis.   Those who do have it, have a very serious form of mastocytosis and it comes out of hiding angry and very obvious.  Those of us who spend years with the kind of issues you have don´t have it, so you can relax.  

I hope this helps!

Lisa