All - here's my case - any thoughts or words of wisdom are greatly appreciated.

I'm 51 years old and expecting a diagnosis of IgM Anti MAG neuropathy from my neurologist at my next appointment 15 days from now. I'm doing as much homework as possible to prep for that appointment.

I have symmetrical sensory loss in my skin, burning feet (everyday but not 24/7) and some very minor less than burning in my arms and hands (off and on) and I have imperceptible motor involvement thus far. The initial symptoms began in early March and have progressed. I have a MAG antibody (IgM) titer of 1:3,200 - the test guideline for interpreting the results were: < 1:1,600 normal, < 1:3,200 moderately elevated and < 1: 6,400 highly elevated. Immunofixation (serum & urine) have a "normal pattern" and no monoclonal proteins detected i.e., not indicative of plasma related cancer. But no bone or nerve biopsy. I am scheduled for an MRI of my lower back next week (not sure what the possibilities are there, no real back pain - any thoughts?).

I've read about a few folks who have had IgM Anti MAG neuropathy for many years and seem to manage the diminished quality of life. The literature seems to indicate slow progression but there is a dearth of information about long term outcomes - 10 or 15 years and beyond.

While my condition is manageable if degeneration continues at the same rate it's hard to image an outcome 10 years from now. I can't find cases of successful treatment for this type of autoimmune disease. Surely someone has experienced remission as a result of treatment. Anyone? Apparently IgM Anti MAG neuropathy is rare enough not to attract much research funding or specialization. Who are the heavy hitter doctors/clinics for this disease?

Rituximab is the drug that's appears to be the "next new thing" for this disease but that was purely serendipitous as it was developed to treat other diseases. And health care insurance companies are apparently not real excited about paying the steep cost for what I believe is still considered an experimental use for IgM Anti MAG neuropathy. But early intervention is almost always better - if I wait for more serious degeneration to set in I'm likely to have fewer viable nerves to heal.

So, as is probably apparent, my homework has been a bit depressing. I continue to scour the Internet looking up medical terms, testing assay methodologies, biological process and how the immune system goes about destroying nerve sheaths but I've learned little that offers promise thus far. Treatment studies (usually very small number of participants) and anecdotal case studies, a few trials but overall the body of literature is comparatively thin.

So that's my story - my journey has just begun