Hi all I am newly diagnosed Castlemans disease. Hoping to meet others with this rare disease Nat

What are your symptoms and how long did it take to be diagnosed?

Hi, I didnt have any symptoms.. It was found accidentally after a MRI for another reason. I had the tumour removed after many scans and the lab results came back as Castlemans. I am now 1 yr after posting my original message and so far they havent located any more tumours, I get 3 mthly bloods and checks from my haematologist. Do you have Castlemans too?

I really think I do, yet the Dr.'s haven't said it in cement yet. I have very large lymph nodes in my chest, on my neck and jawline and my immune system is wiped out. I'm waiting for results on recent blood work. The dr.'s are finding me very difficult to diagnose. It's worrisome. Hope I don't get lymphoma. Thanks for answering. I had a media stenoscopy last March where they took many samples of the lymph nodes in the chest. It was inconclusive. In September I had a lung biopsy, since I also have a rare lung disease and that's when Castleman's was brought up. They just aren't willing to or have enough proof that that's what it is yet.

Mine was diagnosed when they removed the entire tumour, I think thats the only way to diagnose, before that, they thought it was a nerve sheath tumour, they ruled that out and then thought it was lymphoma, right up until my results came back. Have you spoken to Jim johnstone? he can put you in touch with any experts in your area or nearest, they can diagnose you if your current place cannot. Do you use FB? this is pretty active International Castlemans Disease Organization https://www.facebook.com/groups/48343887930/ also https://www.facebook.com/care4castlemans and the web page which Jim runs, he is very active on FB http://castlemans.org/

Thank you VERY much!