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Originally Posted by EDELSTEP
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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Congratulations on your remission with Rituxan! I had hoped for the same but found no effect. I am currently back on IVIg for 2 consecutive days every three weeks. I am also exercising 3-4 days/week doing water aerobics/Zumba/Palates/etc. at a club to strengthen my core and legs in order to preserve my ability to walk and improve balance for as long as possible. Granted, I'm surely not at the top of these classes, but I am trying. I do these classes in the mornings as I find that I am too tired to do much later in the day. Insurance is paying for my IVIg treatments thankfully! I am feeling pretty good. I feel that the exercise also benefits my mood as depression has been a problem while I have had anti-MAG. I am also taking Cymbalta, which helps. Intention tremor of my hands has continued to be a problem that does not allow me to work. I see a hematologist/oncologist every 6 months-1 year as I have abnormal levels of M paraprotein that can get high enough over time to become a condition called Waldenstrom's Macroglobulinemia which needs to be treated. My uncle died of this at the age of 49. I hope you are continuing to do well.
Blessings,
NancyKay