Cutaneous mastocytosis

Jazzermom!!! I am diagnosed with non-clonal mast cell activation disease which is in the same class of medical disorder as mastocytosis except we unfortunate individuals with nonclonal react more than masto and are systemic. When were you diagnosed and who finally found it? If you dont mind me asking? I was diagnosed 3 years ago but have been dealing with it for over 20 years. Do you get any of the other symptoms..i.e. Swelling...hives....heart...fatigue....etc....i had to go on disability as my reactions are severe and my triggers are medication (all)...stress...exercise...heat...sun...some foods.. What are your triggers??? Sorry for all of the questions but i am so glad to find someone with the same thing....i mean...our illness is sooo rare that a lot of drs dont even know how to treat us! Im so sorry you have but so glad ive found you!!!

iWantToLive, don't give up yet, there may be others around on here with your illness...Sorry for what your going through, it's really hard when it takes so long for a diagnosis and with so many doctors that are clueless...Medical schools need to improve, so that these diseases like yours can be found and diagnosed earlier...
I have a common disease RA and had the feet swelling years ago, but it took over 20 years to finally get the dx, it is frustrating, doctors need more compassion and to stop saying it's all in your head!