Lisa,

Welcome to the forum, and so sad your mom has been so sick.  Has she had any testing for mast cell disorders?  Has she tried a low histamine diet?  Is she on any meds to see if they help her mast cell disorder?  I hope Mayo will help her at least get diagnosed. This forum is very helpful for information about lifestyle changes that will help symptoms and to help people figure out what is triggering them. Her symptoms certainly could be from mast cell disease.

As you may know, we usually recommend a small group of doctors who we consider experts in mast cell diseases.  If she has systemic mastocytosis, the doctors at Mayo might be able to help her.  Do you know who she is seeing there?  If she is negative for SM and for some other illnesses with similar symptoms, then she might need to see a different doctor to have her mast cell disorder treated properly.  If you want to post how her appointment goes and what they said, please feel free.  The main thing, if she has a mast cell disorder, is to rule out other possible causes of her symptoms and then to try combinations of H1 and H2 histamine blockers as well as diet changes,  figuring out what her triggers are and avoiding those.  There are meds that need to be avoided, including CT contrast dyes, and those lists are on this site, too.

It's important for her to have a list of questions for the doctor at Mayo and/or an advocate to bring the list and take notes if she can't.  

Your mom is lucky that she has a daughter who will look into this for her!  Let us know how things are going....