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- Mon Nov 28, 2005 6:12 am
I was told after a lymph node removal in 2002 that I had "what looked like" Plasma cell varient Castleman Disease. The sections of the lymph were even sent to Walter Reed/Dept of Defence. They said the same things" looks like PSV Castleman Disease.
Onocologist says there's nothing he can do without a definite diagnosis and even then there isn't much he can do - he says it won't kill me - although on the Castleman's website people have died.
I have so many doctors and take so much medication it's unbelieveable.
I think what I need is a type of doctor or someone that will put everything (tests, symtoms, etc.) together and be able to make sense of the mess. I see an internal specialists,rhuemotolgist, neurologist, pain specialist, pulmonary doctor and dietitician regularly. I see an onocologist, infectious disease specialist, orthopedic surgeon and a urologist when needed. I'd like to get them all in one room just so they can all talk to each other and explain what they are doing, but the chances of that happening are slim to none.
| Dr. Safaa Mahmoud
- Fri Aug 11, 2006 3:58 pm
Castleman's disease, is a benign lymphoproliferative disorder. It is characterized by a single, solid growth within lymphatic tissue in in any part throughout the body.
A plasma cell type of Castleman's Disease can occur in more than one prat of the body.
Associated symptoms include: fever, fatigue, weight loss, skin rash, and hemolytic anemia.
The disease is usually self-limited. The treatment of Castleman's Disease is generally symptomatic. You did not clearly mention your main symptoms and whether the disease is limited to that removed lymph node or in any other parts of the body.
Surgical excision is the treatment of choice in most cases of localized Castleman's Disease and is curative.
Highly aggressive generalized disease is fatal in spite of aggressive management.
Non-Hodgkin's lymphoma is known to occur in the context of Castleman's disease, but more frequently with the generalized multicentric one.