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?

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...

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

--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?

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?

Good morning. I am brand new to neurotalk. I have the anti-mag syndrome and am trying to work my way around this site to get and share into. Are you still posting? Will appreciate hearing from you. Nancy W.

I also have MGUS. It is at a very low level.....my idiopathic neuropathy has stayed in my feet...but walking does exacerbate my symptoms. Other things also can make it worse....if not for tramadol and lyrica....I would be in serious trouble. Mine also started with numbness in the feet. I had morton toe surgery on both feet...just killed to nerves...so they don't zap anymore..but that wasn't my problem. It is definitely connected to the anti-MAG scenario. At least it isn't idiopathic in nature. I feel for you that it is getting worse. My feet can really suck sometimes...but it has not traveled up my legs. The main concern with MGUS is the possibility of it progressing to multiple myeloma. That is a cancer that is fatal...always. I am supposed to have my IGM level checked once a year. I am due...actually overdo....it is a scary situation. I've had this for almost 5 years...with no change. But...we'll see after the test. Good Luck! I'm glad I have finally found someone that I can truly identify with!!!!

Hi Granacki,
I was wondering how you are doing since this posting. Can't tell what date it was. your neuropathy sounds much like mine. I tried many different modums and none were effective. In July my condition had progressed so that I could hardly walk and my balance was really bad. I went on a diet eliminating sugars even tho I am not diabetic, but they were high just the same in the pre-diabetic category. My diet also cut out most if not all processed foods. My sugar dropped drastically in 6 weeks and I continue to have a lab test periodically to keep it down. My balance returned in a couple of months, my walk improved consistently. I followed the book "There is a Cure for Arthritis" a book written back in the 50s. I also implemented a regular exercise program and lots of walking. This all has done me more good than anything. I continue to improve and can see the improvement. I also take the supplements that Mrs. D recommended and have taken them for over a year. I am a firm believer that what we put in our mouth is the first most important treatment we can do. It starts there. Hope to hear you're doing well.

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