How can i find a physician that is an expert in systemic mastocytosis in portland or? i have been to many drs, but none knowledgeable about masto.

Mastocytosis: http://www.tmsforacure.org/welcome.php i would start with this website and call them to recommend people in your community who provide therapy for mastocytosis. The university of michigan is the leader in mastocytosis, so they can be used as another resource to get the help you need.

Zebra : This is a relatively rare disorder and you know more about this condition than most doctors. Inquiring with an allergy immunologist or rheumatologist may provide the right lead. Can contact the mastocytosis center at harvard's brigham and women's hospital, as well to get some leads. Good luck.