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Old 09-16-2009, 02:31 AM #31
NancyKay NancyKay is offline
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Quote:
Originally Posted by LauraGTimes View Post
Hi,
I'm new to all this stuff, bear with me :-).
I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed?
Hi Laura,
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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Old 09-18-2009, 02:51 PM #32
LauraGTimes LauraGTimes is offline
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Originally Posted by NancyKay View Post
Hi Laura,
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
Thanks so much for writing back, also. I am still waiting for the official diagnosis, results of the lumbar puncture and spine/neck MRI should be back today but my MD is off until Monday, so a weekend of waiting (and worry) is ahead. I am getting a second opinion as well, which is already scheduled, but I feel like the Dr. I am seeing just wants to treat symptoms at this point, he has admitted this is not something he has seen often and the progression has been very fast in the last few weeks. I am just waiting for the offical diagnosis. What other tests were run and led to your diagnosis? Mine started with just the weird sensations and falling asleep feelings but its rapidly gotten life disrupting. Does yours get a lot worse at night? Dropping things? Have you had much motor involvement or just sensory? Sorry for the barrage of questions, its a rare thing and nobody that I talk to has heard of this. I work in OB/GYN and even the MD's I work with are completely unaware of this. Thanks for your time, I will let you know what treatments and official diagnosis they hand me.
Hope you're doing well.
Laura
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Old 09-19-2009, 11:36 PM #33
NancyKay NancyKay is offline
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Originally Posted by LauraGTimes View Post
Thanks so much for writing back, also. I am still waiting for the official diagnosis, results of the lumbar puncture and spine/neck MRI should be back today but my MD is off until Monday, so a weekend of waiting (and worry) is ahead. I am getting a second opinion as well, which is already scheduled, but I feel like the Dr. I am seeing just wants to treat symptoms at this point, he has admitted this is not something he has seen often and the progression has been very fast in the last few weeks. I am just waiting for the offical diagnosis. What other tests were run and led to your diagnosis? Mine started with just the weird sensations and falling asleep feelings but its rapidly gotten life disrupting. Does yours get a lot worse at night? Dropping things? Have you had much motor involvement or just sensory? Sorry for the barrage of questions, its a rare thing and nobody that I talk to has heard of this. I work in OB/GYN and even the MD's I work with are completely unaware of this. Thanks for your time, I will let you know what treatments and official diagnosis they hand me.
Hope you're doing well.
Laura

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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Old 02-01-2010, 05:46 AM #34
sirjon sirjon is offline
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Frown I too am like you...

Quote:
Originally Posted by LauraGTimes View Post
Hi,
I'm new to all this stuff, bear with me :-).
I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed?
Hey Laura, My name is Jon and I live in New Zealand. I read your story with interest and as you can see here you are not alone.
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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Old 02-04-2010, 03:16 PM #35
Annee Annee is offline
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Smile Just diagnosed with anti-MAG neuropathy

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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Originally Posted by Granacki View Post
Greetings all
I tried posting this under New member introductions and no one else with this condition responded so I'm posting it again here. I'm new and still a little murky on how to post things.

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?
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Old 02-04-2010, 04:34 PM #36
Kitt Kitt is offline
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Quote:
Originally Posted by Annee View Post
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.
Here's a site on Anti-Mag neuropathy.

http://www.athenadiagnostics.com/con...Polyneuropathy

Maybe you have read it.

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Old 02-05-2010, 07:29 AM #37
glenntaj glenntaj is offline
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glenntaj glenntaj is offline
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Default Not all anti-MAG--

--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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Old 03-03-2010, 10:03 PM #38
jrip jrip is offline
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Default Anti-Mag

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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Old 03-07-2010, 12:39 AM #39
jakatak jakatak is offline
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Default Mgus

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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Old 03-16-2010, 11:32 AM #40
NANCY W. NANCY W. is offline
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Quote:
Originally Posted by jrip View Post
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.
Good morning. Seems like we have similar age (I'm 70) and experience with antimag neuropathy. I began to get symptoms of deadness in toes about 12 years ago, was diagnosed with perf. neuropathy and I wasn't offered any help or add'l info until early 2009. Over that time span my feet got pretty numb, and muscle problems began in ankles and legs (bad balance, hard to keep up with group on walks, etc.). In early 2009 I was diagnosed with the antimag thing at OSHU. They started me on a regimen of plasma Pheresis (removing all plasma from bloodstream and the antimag proteins with it) which I continued for 4 months.
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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