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!