Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Castleman's Disease (Read 3522 times)
kathie375
Rookie
*
Offline


I Love YaBB 2!
Posts: 9

Castleman's Disease
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
Back to top
 
 
IP Logged
 
Anaphylaxing
Guru
*****
Offline


Hang in there! You can
do it!
Posts: 836

Re: Castleman's Disease
Reply #1 - 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? Shocked
Back to top
 
 
IP Logged
 
Starflower
FORUM ADVISOR
*****
Offline


Not a medical doctor
Posts: 715
Indiana
Re: Castleman's Disease
Reply #2 - 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
Back to top
 

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print