Originally Posted by Granacki (Post 146815)

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?

Originally Posted by michaeljay (Post 150260)

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

Originally Posted by LisaMac (Post 790055)

Hi -
Just another comment... Rituximab does show improvement for PN - I've experienced it, however it's tough to get it funded if not for a cancer treatment (which was my case - in Canada, anyway). I am on a 'maintenance schedule' now, recieving a dose every three months for two years. My neurologist feels I should be 95% recovered by then. Mynumbness is still unchanged but my motor skills and reflexes are much better.
Hope this helps!
Lisa

Originally Posted by CarolH (Post 861979)

Granacki, this post is to you and any others out there with AntiMAG IgM.

In 2007, Granack posted a question seeking out others with AntiMAG neuropathy, but did not mention whether it was IgM, IgG or other related. Now, it is 2012. From you and from any other's with AntiMAG IgM, I am wondering how you are doing, how your symptoms have or have not progressed, and what treatments you have had.

My husband's symptoms began in 2001 at age 68. In 2005 was diagnosed with CIDP variant - AntiMAG IgM polyneuropathy and 2 years later with a benign form of NHL or paraproteinemia / Waldenstrom's (exact diagnosis was never completely clear but bone biopsy allowed him to get Rituxan) He had 2 years of steady IVIG treatment followed by 2 full rounds of single dose (not double) Rituxan. Neither helped much.

His disability remained fairly steady from 2007 to 2011 - difficulty walking, fatigue, numbness (toes to knees & hands), ataxia, no pain, proprioceptor nerve damage, sensory nerve damage, and likely later axional damage. He has required use of a powerchair most of the time but can manage walking short distances with a rollator. Cognitive functions are intact.

Now, however, he seems to be developing neurogenic bladder retention problems. We fear it might be related to his neurological problems. Our University of Washington neurologist predicted possible (in a certain % of patients) problems with the diaphragm but not bladder/bowel issues.

Now soon to be 79, we would like to compile information that has never been available to us about long term impact of AntiMAG IgM. We hope that it will serve as a guide to others with this disease, helping them plan their lives and activities more effectively.

To this end, we appreciate updates here from all AntiMAG IgM people regarding their ages, gender, symptom onset and progression, treatments and contact with other AntiMAG IgM people who might want to add their information here.

As much as we appreciate support and contact from people affected with other forms of CIDP, etc., we would prefer to reserve this post to people specifically diagnosed with, or who wonder about having AntiMAG IgM.

Thanks to you all!

Originally Posted by jrip (Post 628525)

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.