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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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Hi My husband has also been diagnosed with anti MAG neuropathy. His count is now 300,000 and climbing. We have tried rituxan, plasma infusions all to no avail. The rituxan was $6000 per treatment and now his insurance is refusing to cover it. For the last year, he has been wearing leg braces ALL day. He has numbness in both legs up to his knees making walking, stairs very difficult. His legs are very slender now as there seems to not be many muscles left. We have been to three different cities, Austin, Dallas, Houston - looking for the right neurologist but everything seems to be a dead end - meaning there doesn't seem to be a treatment for my husband that is going to be effective. They are monitoring his blood to check for cancer cells and luckily his bone marrow biopsy came back clear last month. We are hoping he will be able to continue walking with braces, but his doctor has told him to start considering other options.