My symptoms started in Jan 2011. Numbness, weakness, balance gone, falling down both legs to mid calf and fingertips both hands. My neurologist made dx and sent me to Mt Sinai New York for second opinion after I failed the emg test. He said Rituxin no plasmaphoresis no IVG. In September 2011 I had the 4 doses a week apart tolerated well. With 6 months of treatment hands fine. Only numbness in both feet below ankles. No pain no balance problems or weakness. I travel, walk, drive and go to my neurologist every 6 months. The minute if I start to have progression of symptoms I will call him and have Rituxin again. The choice is being wheelchair bound. I do exercise. If you don't use it you lose it. No other meds were given. No steroids. I don't know how long this remission will last but I am enjoying every day. Dx age 65 now 68. The key to the treatment working is to have it done as soon as you can.
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Originally Posted by Joebuddy
My symptoms started 3 years ago. I had numbness in my feet and big toes. I went to my family Dr who referred me to a neuroligst. He did a nerve conductance test that showed neuropathy in both legs & both arms. He ordered a spinal MRI (normal) and blood tests (normal). He said since my general heath is good at 65, no treatment and call him if symptoms worsened.
I was not satisfied with his assesment. Since I live near Johns Hopkins Hosp., rated best hospital in US for Neurology, I scheduled an appointment. The doctor was much more thorough in his exam and the nerve conductance test was much more envolved. He also did the blood test that showed the elevated level of Igm protein and explained the condition on anti-mag neuropathy. He reccomended that I see a hemotoligist for further testing. I
saw an excellent Dr at Mercy Hosp in Baltimore who put me through a skeletal survey, and a bone marrow biopsy. Both normal, no luchyemia. He suggested that I try the Rutxin infusions. I had a 4 week cycle of infusions, twice in 3 months. There were very little side effects.....a few chills, drowsy from the Benydril. It all goes away after the infusion. There was no improvement from the 8 infusions. I saw another Neurologist at Hopkins. He has been there 17 years and has traveled the world with Drs about this condition. I would imagine that he is a leading authority on this disease. My feet are getting worse, I see him again in June.
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