On 6/5/2008
MaiMaiE wrote:
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.
Hello, I just saw your message today. Boy, I finally found someone that can relate to me and the symptoms i have been going through. I have had the most frustrating 2 years of my life. No thanks to doctors not doing there job properly. I was diagnosed with the acquired von willebrand and mgus 2 years ago when I started feeling ill. I also have had IVIG prior to a surgery I had a year ago. The IVIG just about killed me. I have a very severe form of the von willebrand. Barley measurable. I could tell you all the mishaps that I been through, no one could believe it. I lucky I am not dead from all the mishaps. Bone marrow biopsys done without ivig, bleed bad for 2 days straight, doctor doing surgery forgot what patient he was working on, only completed part of the surgery after 5 days($30,000) of treatments, which I was having a reaction to. Doctor not reading charts, etc........Well, Here I am now, feeling ill still not having the proper blood tests run. I have been completely disappointed in the medical field and have been tramatized to the affect of never seeing a doctor for a very very long time. I don't mean to offend the good doctors out there, but It has just been a nightmare. I hope you get better results with your doctors and wish you all well. Love to hear more about your condition . Thanks again for the message