Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> Castleman's Disease http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1311909460 Message started by kathie375 on 07/28/11 at 16:17:40

Title: Castleman's Disease
Post by kathie375 on 07/28/11 at 16:17:40

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

Title: Re: Castleman's Disease
Post by Anaphylaxing on 01/14/12 at 16:41:16

No, I don't but am interested. All I know is that Castelman's is extremely rare. How were you diagnosed with it? :o

Title: Re: Castleman's Disease
Post by Starflower on 01/15/12 at 03:08:10

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