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10-22-2014, 02:35 PM | #121 | ||
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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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12-07-2014, 12:02 AM | #122 | ||
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I did get referred to another local Neurologist for arm pain. I'll take the anti-MAG and other previous test results, but I expect he'll just blow all that off like everyone else has so far. Guess I'm resigned to living with getting gradually worse. I don't have the energy or fortitude to keep looking for a doctor that knows about anti-MAG and/or is interested in investigating. I hope you were able to get insurance to cover your treatments and that they have helped you feel better. |
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01-09-2015, 03:17 PM | #123 | ||
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Junior Member
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Blessings, NancyKay |
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01-21-2015, 05:36 PM | #124 | ||
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Newly Joined
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01-21-2015, 06:46 PM | #125 | ||
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Grand Magnate
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Welcome mima.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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01-22-2015, 01:13 AM | #126 | ||
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Junior Member
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There are a number of us with anti-MAG. I've had it for about 13 years (now 59 years old) and have had both Rituxan and IVIg infusions. I did not benefit from Rituxan unfortunately and am finding IVIg and exercise to keep my core and legs strong to be of most benefit. I have balance problems, hand tremors, burning feet (if I walk very far), have severe restless legs syndrome. Thankfully, as long as I don't get too warm or walk too far, I don't really have much discomfort. I take Mirapex for restless legs which really helps. I have been seeing a very good neurologist at Virginia Mason in Seattle, WA. Glad to live in a cooler climate! Hope you find that the Rituxan is helpful. Keep in touch and let us know how you are doing. Blessings, NancyKay |
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02-06-2015, 02:40 AM | #127 | ||
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New Member
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As a side note to Steve in Chicago I know about you and I agree with your observations. I forgot who mentioned shingles, but I am convinced that my shingles vaccination was the trigger for my Anti-MAG. I agree there has to be an anomaly in your physiology, that standing alone would not bring on the neuropathy, but add 60 years of processed foods and then the live virus vaccine and boom three weeks later neuropathy sets in. I know this is long, but because I feel like the diet change has helped me maybe it will help others. I will update everyone as I progress, or hopefully remain as is! |
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"Thanks for this!" says: | madisongrrl (02-07-2015) |
04-11-2015, 11:32 PM | #128 | ||
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New Member
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04-12-2015, 10:58 AM | #129 | ||
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Grand Magnate
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Welcome epfoster2.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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06-29-2015, 08:48 AM | #130 | ||
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I was diagnosed with Anti MAG neuropathy in February by Norman Latov in NY after being unsuccessfully treated with IVIG for what my original neurologist thought was CIDP. I have had one round of Rituxan that finished in April and feel that it is no better, possibly worse.
We think mine started 8-9 years ago and first showed up as what was diagnosed at the time as Bells Palsy, with left side of face effected and never recovered. Have worsening numbness, tingling and strange sensations in my feet. I walk 3-4 miles a day, still work as a nurse and play golf, walking 18 holes. My feet are definitely worse after walking but can't help but think staying in the best possible shape is advantageous. Keep hoping for new research into treatments but so few people with it there seems to be no push for it. Quote:
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