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Originally Posted by wyngaerde
Hello. My husband was diagnosed with anti MAG peripheral neuropathy on May 12, 2009. His anti MAG count is 110,000. He begain having symptom 2 years ago, starting with numbness in his toes on his right foot. He now has numbness and weakness in his toes, foot, and ankle on his right side and is beginning to have numbness in his toes on his left side. We are seeing his neurologist again on July 14 to discuss treatment with rituxan. We have read about its side effects, effectiveness, and high costs. We would like to hear from anyone who has experience with this illness. Does it always progess to wheelchair confinement and, if so, in what timeframe? Is it better to have treatment earlier or later? We appreciate your feedback. Thank you.
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Good morning. I had the same beginning symptoms 10 years ago, which gradually worsened so that I had "drop foot" and walked awkwardly (like dragging through mud) and lost varying degrees of muscle strength in feet, ankles and legs. I had been under the impression that there was nothing to be done,(i was told this way back when) but I finally got a referral to neurologist at a large teaching hospital in Portland, Oregon. Since April I have had 13 treatments of plasmapheresis via a subclavical port and I have regained some feeling and strength. Very subtle improvements - not overnight sensations. Dr. is now suggesting future treatment of Rituxan -- which came as a surprize since I was seeing improvment with plasmapherisis and had expected to stay on it for many more months by having a fistula installed.
I send this information along to you and hope that other folks with antiMAG will respond to both of us with their experiences. Regards, Nancy W.