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09-16-2009, 02:31 AM | #31 | ||
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Junior Member
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I was diagnosed with anti-MAG neuropathy 7 years ago. My symptoms started with numbness in my finger tips and toes and weakness in my legs (falls). I went to a neurologist who ran a lot of blood tests and EMG/NCS. It turned out that I had elevated IgM and anti-MAG auto-antibodies. The NCS showed slow nerve conduction. I wasn't diagnosed with anti-MAG peripheral neuropathy until I saw a neurologist at a large research facility who had taken care of other people with this condition. I was started on IVIg which helped for a number of years. The symptoms have progressed slowly over the years to burning in my feet and hands when they get warm, balance problems and coordination problems. I haven't had any treatments after the IVIg became ineffective (about 2 years ago). I was 46 when diagnosed. You are very young to have anti-MAG peripheral neuropathy. I hope you get a diagnosis soon and good treatments. In comparison to other autoimmune conditions - this one isn't so bad. Let me know what you find out and what treatment you get. Blessings to you! NancyKay |
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09-18-2009, 02:51 PM | #32 | ||
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Hope you're doing well. Laura |
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09-19-2009, 11:36 PM | #33 | ||
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Junior Member
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Hi Laura, Mine was very slowly progressive. I was in my mid 40's when I was diagnosed. You are very young to have this diagnosis as it is usually the diagnosis of men in their 60's & 70's. I will be very interested in hearing what your official diagnosis is. I know that waiting is very difficult - hang in there! NancyKay Last edited by NancyKay; 09-19-2009 at 11:56 PM. Reason: had previously given this information |
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02-01-2010, 05:46 AM | #34 | ||
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New Member
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I, like you have been recently diagoned as CIDP anti-mag (in March 2009). At first I was incorrectly diagnosed as just CIDP. I started on prendisone and azathioprene tablets, then had 25 intragam infusions, then went to fortnightly 1000mg methyl predisilone pulsed steriod infusions and I still struggled. In October 2009 a blood test surfaced 5 months after it was done showing my anti-mag levels were at 9,000 (in April). Another blood test was done immediatly and showed my anti-mag was now at a staggering 55,000. I was immediatly funded and put onto 4 Rituximab infusions which finnished in November 09 when I also had some hyperbaric oxygen therapy. I had no problems with Rituximab what so ever. Some days I even went to the gym in the afternoon following my morning treatment! Its now February 2010 and Im awating the results from my Rituxmab chemo which is another blood test in mid February. I hope it has some effect. How are you feeling and what progress are you making? Are you on facebook? Im easy to find under Jon Anda in New Zealand. I wish you well. Regards. Jon |
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02-04-2010, 03:16 PM | #35 | ||
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I'm new to this site - don't quite know how to use it! I've just been diagnosed with anti-MAG neuropathy. Neurologist tells me it is quite rare, usually hereditory. My next step is to have a work-up with hematology, possibly a bone marrow biopsy. I have tingly and numbness in toes, seems to have progressed in the last two years to ball of foot. So far I'm able to function normally, walk my dog every day, go to gym 3/week. It is more of an annoyance than painful. Am anxious to get tests from hematology.
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02-04-2010, 04:34 PM | #36 | ||
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Grand Magnate
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http://www.athenadiagnostics.com/con...Polyneuropathy Maybe you have read it.
__________________
Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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02-05-2010, 07:29 AM | #37 | ||
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Magnate
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--is hereditary; quite a lot is acquired, generally as a cross-effect of monoclonal gammopathy or other immune blood disorders, which is why they want the hematological work-up.
Take a look at the following from the Washington University at St. Louis neuromuscular website--it's written in doctorese shorthand, but very comprehensive: http://neuromuscular.wustl.edu/antib...imdem.html#mag http://neuromuscular.wustl.edu/antibody/mprotein.htm |
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03-03-2010, 10:03 PM | #38 | ||
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I'm a 75 year old male and have had Anti-MAG demyelinating polyneuropathy for probably eight or nine years. It began with a numbness in my feet. I became aware of it trying to walk on beaches while hunting. My balance was poor. I began losing weight, mainly muscle. It was at this point that I was diagnosed with neuropathy. My neurologist put me on Cytoxin, which seemed to arrest it for awhile. Lately my balance problem returned with a vengeance.
I just returned from a visit to a neurologist at Virginia Mason, who told me after some tests that my neuropathy is quite bad. I walk now with the aid of a cane. He told me of a controlled study for Rituximab that concluded it is an effective treatment in patients with A-MAG-DP and suggested I consider it. Any benefits only last a year and, as one posting mentioned, it is so expensive I'm not sure my insurance will go for it. I'm trying to make up my mind whether to give it a try. Sometimes I have pain but for the most part the neuropathy's effect has been on strength and mobility. |
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03-07-2010, 12:39 AM | #39 | ||
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member
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I went to the Neurologist 5 years ago with the burning feet. I was diagnosed with idiopathic neuropathy. I also was found to have monoclonal gammopathy of unknown significance. MGUS. Yes, there is a direct correlation between MGUS and PN. I have to have my blood tested once a year, to make sure that my protein level doesn't rise. It can turn into multiple myloma. Not a good cancer. So far....my level is at .01, and it has stayed that way for five years. I can live with the burning pain.....
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03-16-2010, 11:32 AM | #40 | ||
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Junior Member
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It helped moderately with numbness in feet and weakness in legs. OSHU is now recommending treatment with Rituxamab -- I see the doctor today to find out about these treatments. I am wondering if medicare took care of payments for your rituximab treatments?? Or did you go ahead with it? I'll be happy to share my info/experience with this treatment and my condition with you and others. |
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