On 4/16/2008 Majolica wrote:
Hello, I can't answer any of your questions, but I also have many of the same symptoms that you describe. I also have mgus,IgG lambda type. Was diagnosed 2 years ago, along with a rare blood disorder called acquired von willebrand disease. Its extremely rare to acquire it, always inherited. I would also love to know why we have these symptoms if we are so stable. Wish you luck on finding more of your answers also.
Sorry I am new and tried to post earlier and only posted your message and not mine. Here goes...
I was suprised to see someone else that has acquired VWD! I am just doing research on plasmacytoma and came across your post. I have been seeing my hematologist for almost 6 years and he has said from the beginning that I have something wrong with my B cells. I have been told maybe Hairy Cell Leukemia, Lymphoma or giant B-cell something, but have never received a real diagnosis and treatment except for hypogammaglobulinemia for which receive monthly IVIG treatments. I have had an undiagnosed platelet disorder for years and didn't learn I had the bleeding problem until I had heart valve repair surgery last year. Getting platelets doesn't help me, so I must have Humate P before and after any surgery. My doc told me this week that my symptoms make him think Plasmacytoma, but he hasn't found it in my blood yet. I had a muscle biopsy looking for vasculitis, but it came back with nonspecific muscle atrophy. I had a skeletal survey yesterday and am hoping to get results tomorrow. My docs are very concerned about my weight loss, and they say I have cachexia. I have slow digestion, neurological problems, pain in my backbone/ribs and muscle and joint pain and FATIGUE. I had a BMB in 2003 and again in 2007. I am 45 and married to the love of my life for 26 years and our kids are out of the house!! I have so much I want to do. My docs suggested sending me to a University hospital, but I just cringe at the thought of doing all those tests again and explaining everything to new docs. I guess I need to find out what the whole process will be like.
I am happy to have found a place where others understand what I am dealing with. Thank you.