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Anyone with Anti-MAG neuropathy?

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Old 09-21-2007, 09:30 AM #1
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Hi Michaeljay! Welcome to our wonderful forum!
Sorry to hear you have Anti-mag but you have come to the right place to learn about it and meet others with PN!
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Old 09-23-2007, 10:12 PM #2
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Hi Michael Jay
So you've had the rituxan therapy. How bad was it? My doctor said not to try it until either I had numbness up to the knee, or muscle weakness in the ankle (like foot drop). I've read accounts of people shivering and shaking throughout and other nasty side effects. Although it's supposed to slow down the overactive Igm protein so the nerves can heal for awhile. So far my neuropathy is limited mostly to the feet and mostly sensory. No balance or fatigue issues. What do you mean by 1 1/2 days in the gym? Do you have a particular exercise program?
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Old 10-02-2007, 11:15 PM #3
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sorry for the delay, I'm back at teaching..

the side effects were pretty intense with the rituxan but not so bad.
the issue i have is that there isnt a clear indication of long term efficacy/
with considerable risk I think.

I would look into the research a little more before.

I am about the same as you mostly in the feet.

I am looking at oral tolerance approaches now with bovine myelin
have you checked this out??
be interested in hearing more from you given we share the same affliction
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Old 10-08-2007, 11:35 PM #4
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Hi again Michaeljay
I never heard of bovine myelin. It sounds promising. I keep thinking if the doctors can't stop the blood from producing too much IgM protein, and they can't stop the protein from attacking the myelin, then maybe over-building up the myelin will at least make it resist the anti-body attacks better. So I have been taking methyl B12 and also lecithin which is supposed to build up myelin. Can't decide if it's helping. I don't seem to have as much burning and tingling and buzzing in my feet, but the numbness keeps progressing, which I assume means the nerves are slowly dying. My next try is going to be anodyne therapy. It's supposed to stimulate the nerves somehow. You said you can't type. How does it affect your hands?
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Old 01-10-2012, 08:55 AM #5
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Quote:
Originally Posted by michaeljay View Post
I have the same problem and went thru a simlar long program trying to identify. they start with the worst..

three years now and progressing slowly/ I did the rituxan therapy with little effect. not sure how bad this will get. I spend 1 1/2 days in the gym/ at this point all sensory no motor but I can barely type and balance is bad

be interested to share notes
i have been diagnosed with anti MAG recently after years of trying to figure out what the problem is... they thought i had reynodes syndrome but i suppose that was a mis-diagnosis... now that the anti MAG is confirmed i await some kind of treatment but from what i heard nothing really works all that well. chemo therapy is an option....
Rituxan is not available in Canada ... but maybe someday...
so far i have lost most of the feeling in my feet (apart from some tingling and occasional pain) balance is definitely getting worse... especially in darkness...several times i have fallen down the stairs as i mis-step and lose it ... fortunately only fallen from lower steps ...

Doctors do not know how i acquired this ... it may be because of early radiation many years before ... ??or possible street drug use back in the seventies? possible frost bite back in the seventies?
anyone experience a similar thing?

thanks to all on this site...

z
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Old 07-27-2008, 11:01 PM #6
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I was diagnosed with anti-MAG neuropathy in 2002. I was successfully treated with IVIG until 2007. It didn't seem to bring any improvement, so I quit getting the treatments. I am doing OK, as long as I don't get hot or walk or stand too long. I am now living in the Pacific Northwest where it is cool and I am only working part time. I have some balance problems and some coordination problems, but otherwise function pretty well.

How are you doing?



Quote:
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 06-09-2009, 09:30 AM #7
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I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady
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Old 06-10-2009, 08:14 AM #8
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".............I wonder if you are still on this site......."

I doubt it
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Old 08-29-2009, 10:32 PM #9
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Quote:
Originally Posted by MAGLADY View Post
I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady
Hi Maglady,

How amazing that you have anti-MAG neuropathy and stayed on Lummi Island! I am 54 and have been diagnosed for about 8 years. I've gone down to Virginia Mason Hosp. to see a neurologist there. I'm not currently receiving any treatments, but would like to try Rituxan. Let me know what you are receiving in the way of treatment and where you are going to get it.

NancyKay
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Old 09-16-2009, 01:32 AM #10
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Quote:
Originally Posted by MAGLADY View Post
I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady

Hi Maglady,

It's great to hear from you! How are you doing? How long have you had anti-MAG neuropathy? It is a bit over 7 years for me. I am seeing a neurologist at Virginia Mason in Seattle. I'm not sure what treatment to try next. IVIg worked for a while, but I've been off treatment for almost 2 years and the numbness, burning, poor coordination & fatigue just keep slowly progressing. I need to get started on something that works. Hope to hear from you soon. Where did you stay on Lummi Island?
NancyKay
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