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?

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

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

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

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'm another one with anti-MAG neuropathy - diagnosed 7 years ago. Was on IVIg initially with good results. After about 4 years, it didn't seem to be helping with the symptoms any longer. I have trouble walking for very long, especially in hot weather. My feet just burn and feel terrible. Thus, I don't walk as much as I used to. My balance is poor - I really need to think about what I'm doing or I loose my balance and fall. No more running around in a hurry. I just started seeing a new neurologist in Seattle (Virginia Mason Hospital) and need to decide what kind of treatment to start. I would like to try the Rituxan, but my insurance isn't keen on paying for it. I am 54 years old and worry about what my future holds. I had an uncle die of Waldenstrom's Macroglobulinemia - so I worry about that as well. Would love to have some dialogue with others who have anti-MAG neuropathy as I feel alone.

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.