As mentioned previously, my official diagnosis was 2 years ago, but I am positive it started 2 years prior. I do not know my “level”, but it must be quite low, as the progression has not disabled me to any great extent, as of yet, and I am learning to cope. I am doing PT that consists of light treatment, ultrasound, massage and a few exercises. 3 days a week I workout with a trainer with focus on foot and leg strength. On 3 other days, I ride my bicycle 10 miles per, I take 1 day off each week. Daily use of an inexpensive foot massager is also part of my regime. My neurologist has me on a very low dose of amitriptyline, 1 tablet at bedtime. The hand tremors and numbness is something that I am not doing any therapy for at this time.

Dear Heidi & Matou,
I heard back from my neurologist and he indicated that “from testing on mice to FDA approval can be up to a 10 year process.” The Polyneuron seems to be the most promising treatment. I have numbness in my feet and fingertips. Having to get rid of my shoes made me very sad, I wear mostly athletic shoes now. The hand tremors are actually the most troublesome.
Regards,
5523Cats

Interesting I found reference to this only yesterday!
http://www.pnas.org/content/114/18/E3689
“Abstract
Anti-MAG (myelin-associated glycoprotein) neuropathy is a disabling autoimmune peripheral neuropathy caused by monoclonal IgM autoantibodies that recognize the carbohydrate epitope HNK-1 (human natural killer-1). This glycoepitope is highly expressed on adhesion molecules, such as MAG, present in myelinated nerve fibers. Because the pathogenicity and demyelinating properties of anti-MAG autoantibodies are well established, current treatments are aimed at reducing autoantibody levels. However, current therapies are primarily immunosuppressive and lack selectivity and efficacy. We therefore hypothesized that a significant improvement in the disease condition could be achieved by selectively neutralizing the pathogenic anti-MAG antibodies with carbohydrate-based ligands mimicking the natural HNK-1 glycoepitope 1. In an inhibition assay, a mimetic (2, mimHNK-1) of the natural HNK-1 epitope blocked the interaction of MAG with pathogenic IgM antibodies from patient sera but with only micromolar affinity. Therefore, considering the multivalent nature of the MAG–IgM interaction, polylysine polymers of different sizes were substituted with mimetic 2. With the most promising polylysine glycopolymer PL84(mimHNK-1)45 the inhibitory effect on patient sera could be improved by a factor of up to 230,000 per epitope, consequently leading to a low-nanomolar inhibitory potency. Because clinical studies indicate a correlation between the reduction of anti-MAG IgM levels and clinical improvement, an immunological surrogate mouse model for anti-MAG neuropathy producing high levels of anti-MAG IgM was developed. The observed efficient removal of these antibodies with the glycopolymer PL84(mimHNK-1)45 represents an important step toward an antigen-specific therapy for anti-MAG neuropathy. ”

I plan on asking my neurologist how long from testing on mice to Medicare approval. Hope it is not too many years.

5523Cats

I am really wondering, what your symptoms are? Also, what has the progression of your symptoms been? Were you a very physically active individual? As mentioned, I was diagnosed in March of 2016, I am 67 now. My balance is still fair to good and I move at 100% – if I wear tennis shoes. The active hand tremors have increased, just recently, and it makes doing some things quite difficult. It is my understanding IVIG does not produce results for our condition and Rituximab usually requires more than one treatment. My neurologist is the head of Neurology at USF and is considered an expert on our condition. He said treatment with Rituximab will be avoided until my functionality is diminished. However, he cannot tell me how long that will take. I do a lot of yard work, ride my bicycle an hour a day, and workout with a personal trainer 3 days a week to work on my muscle strength. However, since I don’t know anyone else with the condition, it is hard for me to determine if my progression is slow or aggressive, and what to expect in the future. I hope to hear from you!

What happened when you went to see the neurologist?
I have seen 2 now, but since I am still fully functional, they are offering no help.