Hello Zaphodbeeblebrox,
I have had anti-MAG peripheral neuropathy for at least 10 years (having been diagnosed at the age of 46). Still walking, but definitely have balance issues so I go slow and hold on to railing, etc., and am especially careful if it is dark. I have tremors in my hands, so writing & keyboarding is difficult. Significantly less energy, leg cramps are sometimes quite bothersome, bad restless legs syndrome too. I started out getting IVIG infusions, which seemed to help for a while. Just finished a round of (series of 4) Rituxan infusions (finally approved by my health insurance) and am awaiting results and hoping for the best.

There is a lot of information on the internet about anti-MAG, some which can be pretty technical, but I would suggest that you start there. It will give you a better understanding of this autoimmune disorder. Briefly - this condition is rare - mostly seen at larger research medical facilities. No known cause, which is the case with most autoimmune conditions. It was first discussed in the medical literature at least 30 years ago. Prognosis - very slowly progressive for most people. Not an exact answer, but it varies. I have had it for at least 10 years, and most people don't know that I am not functioning at 100% - unless they see me bump into things or fall, which I do if I'm not careful, go too fast, or get distracted. There are certainly worse autoimmune conditions, in my opinion, but there is no cure for this currently, and progressive disability usually does come to us over time - 15-20 years or more? Google "anti-MAG neuropathy" and dig in...

Best wishes to you and keep checking for updates on new treatments, etc.

NancyKay

Hi NancyKay,

thank you for the excellent advice,,, i have already been researching much on the web about this disease ... but the technical jargon is confusing..
from what i understand Rituxin is only available in the USA... and since i am Canadian it is not available to me even on compassionate requests..
has anyone tried Electro magnetic Therapy? if so what kind of results ?
i am a level one Reiki practitioner and i perform Reiki on myself each day...
i have mixed results... and not even certain if it helps or not. but i seem to be somewhat better on my feet for a few hours after each session but by afternoon i am back at square 1...
i would like to get as many people together on line to discuss personal health histories to see if there are any similarities that might be poignant and possibly lead to treatments or at least warnings to those who might be candidates for this disease...
would anyone be interested in this?

Z

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!

My Husband was dx with AntiMag IgM at age 64 in 2010. This was 3 years after having a severe case of shingles on his R flank area. His PMD thought his R leg weakness and numbness in his foot was a post herpetic nerve issue. There never was any pain. After 3 years he got up one morning and fell down he had no feeling in R foot and ataxia. We immediately went to a neurologist and after MRI and lots of lab work. The dx was made when everything was negative except Antimag IGM titers. We were referred to Mt Sinai in New York to see Dr Simpson a neurologist specializing in neuropathies. He took one look at my husband reviewed the lab work and electrophysiology tests done on his legs and arms and said your only choice of treatment is Rituxin. In July 2011 he had 4 single weekly doses of Rituxan. We just went for his 8 month visit post therapy for another electrophysio test. There has been no improvement BUT no progression of his symptoms. We are now going to go back to Mt Sinai and review a plan of care based on these facts. I would like to keep you informed on progress. My husband is 66 still drives and works part time 3 days a week. Everyone says the shingles had nothing to do with triggering the autoimmune response in his body but who really knows. We had to pay for the Rituxan ourselves but I work at a hospital and was able to get the medication at their cost STILL very expensive. This was not covered by insurance because the FDA does not approve this drug for this dx. I will keep you informed of our next step. Good luck to your husband also.

Hi Carol,
I was diagnosed with anti-MAG IgM peripheral neuropathy in 2001 at the age of 46. My initial symptoms included balance problems (falls) and sensory loss in finger tips and toes. I had several years of IVIg treatments that seemed to benefit me. After about 4 years, I did not find them beneficial, so I did not have any treatment until 2011 when I had a round of weekly Rituxan infusions for a month. I was very hopeful that I would notice improvement, but I did not. Thought about another round of Rituxan, but neurologist did not think it would be helpful. At the age of 58, my current symptoms include: ataxia, tremor in hands (right worse than left), burning sensation in feet after walking for a while, numbness of fingertips, and legs from below the knees to tips of toes. I continue to work, but find that I need to think about my walking (to prevent falls) and my keyboarding is slow. My grandmother and my mother both had different autoimmune diseases. It seems that with each generation, the autoimmune problem comes at a younger age. Hope this helps.
NancyKay

Hi-
New to this site...I have peripheral neuropathy...almost 2 years...had a brief episode about 2 years before that that resolved...my neurologist says "that's wierd, very rare..." EMG shows mixed, elevated RF, sed rate, pretty much everything else neg...until neurologist tells me on the next round of bloodwork...go ahead and add whatever you want on there...so I do my homework...deductive reasoning, take a guess and go for anti-mag...comes back positive. Review the medical literature....not a lot out there...the lab test says anything between 1 and 999 is positive. Mine's a 139...but I've read (and seen on here) about numbers in the thousands...does the number really make a difference? Also, where are good places to go for care? I'm in New Mexico, bad for care for this...should I go back to Boston, Johns Hopkins...I don't know what to do...Thanks, peripheral neuropathy is the PITTS!

I have been diagnosed with anti-mag antibody about 1 year and 1/2 ago after 9 months of dr appt and tests. I went as long as I could With out pain meds but it got to the point that I couldn't stand anymore, felt like I was walking barefoot on hot sharp pebbles, I am currently taking nortriptyline used for nerve pain, it has helped tremendously I can get by day to day, im still limited if I over do it which before this was considered normal for me I am in pain by evening and usually the next day. But I do not think I would be walking with out it. I am being treated with rituxan, I do not know if it is helping or not. My numbers are up and down. Im on maintenance every 2 months, in November they dropped significantly, today they tripled from November. Dont understand. Other then nortriptyline helping the pain I dont feel anybetter. Do not know what future hold or what to expect by the treatment of rituxan long term. I just get told its so rare no text book way of treating it or knowing what causes it :/

Welcome mima.

Hi Mima,
There are a number of us with anti-MAG. I've had it for about 13 years (now 59 years old) and have had both Rituxan and IVIg infusions. I did not benefit from Rituxan unfortunately and am finding IVIg and exercise to keep my core and legs strong to be of most benefit. I have balance problems, hand tremors, burning feet (if I walk very far), have severe restless legs syndrome. Thankfully, as long as I don't get too warm or walk too far, I don't really have much discomfort. I take Mirapex for restless legs which really helps. I have been seeing a very good neurologist at Virginia Mason in Seattle, WA. Glad to live in a cooler climate! Hope you find that the Rituxan is helpful. Keep in touch and let us know how you are doing.
Blessings,
NancyKay

Hi Everybody. Thought I would update on my progression and medical advice. I am 61 and was diagnosed with Anti-MAG polyneuropathy in May 2014. My titre count was over 70,000. My doctor wanted me to start treatments immediately. She and I both did research online and discovered that the counts do not dictate whether to treat, but rather the effect on your life, ie muscle strength, balance, etc. in the Midwest Washington University in St. Louis is one of the prime treaters of anti-mag polyneuropathy and they also do clinical trials there. I sent all my records to them and made an appointment for July 2014. Prior to getting my appointment I read two books dealing with the role foods play in auto immune diseases. The books were The Paleo Principle and The Wahl Protocol, both believing that food affects our health a great deal. Anyway I decided to try changing my eating habits and started following a modified Paleo diet. that was in late May 2014. I gave up all dairy and grains, along with all processed foods, sugars, etc. I do not eat anything out a box or can, etc. I splurge on grass fed beef, free range chicken etc. When I went to Wash U they repeated my nerve conduction tests and did my blood tests over. My initial count with neurologist in Naperville, IL was over 100,000. At Washington university They do the IGM count a little differently as they use a different scale. My count in there measurement was over 260,000. However, my muscle strength in both feet legs and arms were good. My neurologist said if Anti-MAG progressed to affect my lifestyle then they would want to treat me with Rixataub (spelling). He told me to come back in 6 months and they would check my gait, muscle strength again. So fast forward to December 15, 2014, my second appointment. Luckily for me my gait still steady, muscle strength same. Doc said he would like to do blood tests over but kind of expensive. I said go ahead as I had changed my appointment from January 2015 to December 2014 because I had already met my deductible. Doctor said call in three weeks for blood test results as lab running behind. Dr. Left message that the my bad titre count was down to 6000 from 260,000 on their scale. He sounded pretty amazed. Now I do not know the reason, but I firmly believe that following a modified Paleo has helped. My feet still suck and I always feel like I am walking on pebbles, but no muscle weakness.
As a side note to Steve in Chicago I know about you and I agree with your observations. I forgot who mentioned shingles, but I am convinced that my shingles vaccination was the trigger for my Anti-MAG. I agree there has to be an anomaly in your physiology, that standing alone would not bring on the neuropathy, but add 60 years of processed foods and then the live virus vaccine and boom three weeks later neuropathy sets in.
I know this is long, but because I feel like the diet change has helped me maybe it will help others. I will update everyone as I progress, or hopefully remain as is!