Does anyone else have Castlemans disease. The literature says that it is often found with Mastocytosis but I havent found anyone else that has been diagnosed with it. Kathie

I was investigated for Castleman's disease (I don't have it).  That's how I found my hematologist!  It's another one of those disorders where you really need to see a true specialist... a researcher, not just any doctor.  Here's a website started by Castleman's patients that's a great resource:

http://castlemans.org/

When I e-mailed them, the founder called me right away and helped me get a referral.  

Heather