Anyone with Anti-MAG neuropathy?
 

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?

welcome
 

I'm still on my way to be diagnosed - I suffer from some kind of neuropathy - for meanwhile - idiopatic.
Can you please tell more - how it started? what tests you have done to be diagnosed? and what ever will help us/me to understand more and learn more...

Welcome
 

Hi,
This is the place to be if you have neuropathy. The combined knowledge of this group is tremendous. I don't remember any of the members with Anti-Mag neuropathy. Can you tell us a little about what it involves. Maybe the definition of Anti-Mag..some of us do have autoimmune neuropathies.

Welcome to the group.
Billye

Anti-Mag
 

--refers to antibodies to myelin associated glycoprotein (that's where the acronym comes from), which is one of the basic building blocks of the myelin sheath in both the central the peripheral systems. If one has antibodies, one tends to have a demyelinating neuropathy that has both sensory and motor manifestations, and these can be quite debilitating, as the antibody titer tends to get in the way of the nerves' attempts to remyelinate.

Many people with such a neuropathy also have antibodies to SGPG--sulfated glucuronyl paragloboside, and--here's an area of greater concern--serum M-proteins (monoclonal antibodies) of the IgM class. These are often associated not only with neuropathies in their own right, but with certain blood cancers, and a thorough hematological work-up is recommended.

See:

http://www.neuro.wustl.edu/neuromusc...imdem.html#mag

There are some moderatly effective treatments, but these usually involve the heavy immune suppresants that often are used for blood cancers, such as Rituxan and Cyclophosphamide. Plasma exchange may also prove useful to lower antibody titers.

So glad to hear some anti-MAG responses out there!

Here's what I know so far about anti-MAG. Glentaj is exactly right. It's an elevated IgM protein in the blood that produces anti-bodies that attack the Myelin sheath. I've been told it is mostly sensory, but can develop into a motor-neuropathy. The doctors don't know why a person's blood all of a sudden starts producing too much IgM, or why everyone with the excess protein doesn't get neuropathy. (Rina-- this is a special blood test not in your usual workup). The same elevated protein is also associated with scary cancers like multiple myeloma (bones) and Waldenstrom's macroglobulinemia (blood cancer) so they do tests for those too. I guess I should consider myself lucky since after months of tests at the University of Chicago all the really hideous things were ruled out and I was left just the way I came in -- with numb, tingling, and burning feet, and no cure or treatment.

For me, it started with numbness on the bottom of my left foot and in my toes, and was exacerbated when I walked a lot. (I like to walk miles along the lakefront). I assumed it was a mechanical issue and I went to orthopedic doctors first, who diagnosed it as metarsalgia (basically inflammation from fallen metarsal arches). I argued with a string of orthotists whose expensive orthotics had no effect. Then, anxious to do something more proactive, I wrongly had surgery for a modified bunionectomy and the insertion of screws in my foot to keep the bones from moving around too much. Of course the incisions killed off even more nerves that never came back. Then I tried a podiatrist who specialized in neuropathy who wanted to do more surgery to release what he said was tarsal tunnel (a nerve compression). All along I kept asking these doctors if I should see a neurologist and they said, no, not necessary. Finally after a chiropractor, acupuncture, and chinese herbs, I found my own neurologist and got my diagnosis. I go back tomorrow for a 6 month visit.

From what I hear from CIDP sufferers, another auto-immune neuropathy, that condition sounds far more debilitating. The only positive about CIDP is that it does seem to respond to some treatments. Steroids have no effect on most anti-MAG, nor do they seem to recommend the IV plasma exchange treatement. The only treatment that shows some benefit is Rituxan but since it's so toxic, they wait until you're in really bad shape before trying it.

What little information I have seen says anti-MAG shows "little progression over long periods." With a heightened awareness of every new twitch and buzz and sting moving slowly up my feet for the past three years, and now above my ankles, I'm trying to grasp what slowly progressive means. I'm also trying to imagine how I can walk if the muscles still work but I can't feel any sensations below my knees. I've always had extremely high energy levels, do lots of different things including run my own business and take care of a family, and am pretty fit and otherwise healthy for being almost 60. This anti-MAG isn't really slowing my hyperactivity down too much but it does make walking uncomfortable. I'm just wondering how much longer do I have before it gets really bad, and how bad will it really get?

anti-mag
 

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

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!

anti-mag
 

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?

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

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?