Reply To: Anti-MAG treatment update
That is an excellent article describing the common symptoms of anti-MAG neuropathy. But since anti-MAG neuropathy is so rare, I wonder how the neurologist collected enough data about the disease progression in people with anti-MAG neuropathy to reach a statistically significant conclusion that this disease rarely leads to disability or needs treatment other than needing a cane and/or foot orthotics after many years. I read another paper that stated 30% become disabled after many years (i.e., 10 or more), and another that stated 10% eventually become disabled as in wheelchairs.
Here is a paper about someone with anti-MAG neuropathy with significant muscle atrophy and weakness. But it only refers to one patient! href=”https://www.ncbi.nlm.nih.gov/pubmed/20665518″>
You are probably right about “alternative facts” written about this disease. I don’t think anti-MAG neuropathy with igM protein levels should be categorized along with the other MGUS types with high igG, igA or igD protein levels which normally DO NOT exhibit any symptoms but can eventually turn into a blood cancer with about a 1% chance per year.
But as we know, the igM variation of MGUS does have physical symptoms. But maybe the extent of these symptoms depends on the levels of igM protein in a patient with anti-MAG neuropathy? In the MYELIN ASSOCIATED GLYCOPROTEIN ANTIBODY test I was given, < 1600 igM titers is normal. igM 1600-3200 is moderately elevated. igM > 6400 is highly elevated. The result on my test was igM > 102400 or 64 times greater than the considered “normal” number of igM. I have seen references online of people even with one million igM titers. I imagine these nasty anti-MAG antibodies like thousands of “PAC MEN” working 24/7 inside our legs and arms to destroy myelin coating on nerves, so it seems like someone with one million igM titers would have a much quicker progression and worsening physical symptoms than someone with 3200 igM titers.
What my neurologist has told me, each case of anti-MAG neuropathy is unique and has different levels of severity and rates of progression, or it can remain relatively stable for a long time. So I think it is a case by case basis whether a treatment such as Rituximab or IVIG is needed. For the first 4 years I got by with only custom orthotics in my shoes and was able to live with numb toes and partially numb feet, but during the last year the anti-MAG progression has seemed to shift into “high gear.” So that is why I decided to go in for treatment in the hopes that it stops the progression or even improves somewhat.