I am new to this site - it's comforting to hear others dealing with this disease.
I was diagnosed last January (2010) with Waldenstrom Macroglobulemia, presenting with AntiMag Neuropathy.
Initially it was thought I had MUGU, but a bone biopsy determined the lymphoma. The IgM proteins weren't high enough to warrant an aggressive approach for the WM, but the neuropathy was so bad that they figured if I didn't get treatment and knock back the IgM, then I would be in a wheelchair in a year or two. I am a 48 year old female....go figure, this usually affects men over 65.
I went through 6 cycles of chemotherapy (Cyclophosaphmide, Prednesone, Rituximub), once I completed that (over a period of 6 months), I started maintenance Ritux every 3 months for 2 years. I have completed my first year.
My neurologist said I was lucky to be diagnosed with the lymphoma as that was the only way the Ritux treatment would be funded. She is thrilled with my improvement on the Ritux - I am happy that my walking, balance, reflexes, and muscle tone is improving, but it is a slow process. My numbness still exists. My energy is still low, but I think it has improved a bit - maybe. I am concerned about what happens when I stop the Ritux. I have been told that it is hard on the system to stay on it longer than two years -so they will monitor my blood levels over the next few years and hit me again with the full blown chemo when the IgM's get high or my neuropathy gets worse.
As with everyone on this site, I am frustrated that there isn't more information for us diagnosed with this disease. Statistics show that only 1500 are diagnosed with WM/year in US and 200/year in Canada. Of those, only a small percentage presents with Peripheral Neuropathy. I live in Canada and although I am receiving great care, I have booked a consultation (for Sept 2011) with the Dana-Farber in Boston as they see the largest volume of patients with WM.
My biggest problem is the neuropathy & in particular leg cramps. My neurologist said cramps are a common AntiMag symptom. It's frustrating to exercise to maintain fitness and muscle tone, but when I do it (particularly pilates or any toning exercises when the toes are pointed) I cramp up so bad I can't complete the fitness class. Has anyone had this problem? Any solutions? I am taking supplements (Calcium, Magnesium, Potassium) and drinking lots of water, but it doesn't seem to make a difference.
Sorry for the rambling saga - hopefully there is someone else out there who can relate.
Look forward to reading other's posts as they try new things....