My symptoms started in Jan 2011. Numbness, weakness, balance gone, falling down both legs to mid calf and fingertips both hands. My neurologist made dx and sent me to Mt Sinai New York for second opinion after I failed the emg test. He said Rituxin no plasmaphoresis no IVG. In September 2011 I had the 4 doses a week apart tolerated well. With 6 months of treatment hands fine. Only numbness in both feet below ankles. No pain no balance problems or weakness. I travel, walk, drive and go to my neurologist every 6 months. The minute if I start to have progression of symptoms I will call him and have Rituxin again. The choice is being wheelchair bound. I do exercise. If you don't use it you lose it. No other meds were given. No steroids. I don't know how long this remission will last but I am enjoying every day. Dx age 65 now 68. The key to the treatment working is to have it done as soon as you can.

Didn't mean to take so long to answer NancyKay. Been busy with shoulder surgery, PT, pain clinic visits, applying for SSDI, etc. etc. I hope you are doing well as you can. My visit to the rheumy at Vanderbilt last spring was very disappointing. Nice guy and all but he wanted to blame ALL of my symptoms on fibro. Totally disregarded any previous test results. I give up on finding a Rheumatologist for myself, but found one for my son who is treating him for pain due to some kind of connective tissue problem.

I did get referred to another local Neurologist for arm pain. I'll take the anti-MAG and other previous test results, but I expect he'll just blow all that off like everyone else has so far. Guess I'm resigned to living with getting gradually worse. I don't have the energy or fortitude to keep looking for a doctor that knows about anti-MAG and/or is interested in investigating.

I hope you were able to get insurance to cover your treatments and that they have helped you feel better.

Congratulations on your remission with Rituxan! I had hoped for the same but found no effect. I am currently back on IVIg for 2 consecutive days every three weeks. I am also exercising 3-4 days/week doing water aerobics/Zumba/Palates/etc. at a club to strengthen my core and legs in order to preserve my ability to walk and improve balance for as long as possible. Granted, I'm surely not at the top of these classes, but I am trying. I do these classes in the mornings as I find that I am too tired to do much later in the day. Insurance is paying for my IVIg treatments thankfully! I am feeling pretty good. I feel that the exercise also benefits my mood as depression has been a problem while I have had anti-MAG. I am also taking Cymbalta, which helps. Intention tremor of my hands has continued to be a problem that does not allow me to work. I see a hematologist/oncologist every 6 months-1 year as I have abnormal levels of M paraprotein that can get high enough over time to become a condition called Waldenstrom's Macroglobulinemia which needs to be treated. My uncle died of this at the age of 49. I hope you are continuing to do well.
Blessings,
NancyKay

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!

Hi. I was diagnosed with this disease in 2005. I was told it was an old person's disease and my labs were way off the charts. I could hardly move my legs and arms. I am being treated at OHSU with rituxen infusions every 12-18 months. My results have been excellent. I have returned to near normal but can tell when I need an infusion because I begin to get tired. Of course I have the tingling if I have weight on my arms and over time, the tips of my fingers and the bottoms of my feet are less receptive to touch. But when I was first diagnosed, I couldn't even type, or even hold a pencil. For the most part, exercise really helps and so do massages. Lots and lots of massages. My disease is being well managed.

Welcome epfoster2.

I was diagnosed with Anti MAG neuropathy in February by Norman Latov in NY after being unsuccessfully treated with IVIG for what my original neurologist thought was CIDP. I have had one round of Rituxan that finished in April and feel that it is no better, possibly worse.

We think mine started 8-9 years ago and first showed up as what was diagnosed at the time as Bells Palsy, with left side of face effected and never recovered. Have worsening numbness, tingling and strange sensations in my feet. I walk 3-4 miles a day, still work as a nurse and play golf, walking 18 holes. My feet are definitely worse after walking but can't help but think staying in the best possible shape is advantageous.

Keep hoping for new research into treatments but so few people with it there seems to be no push for it.