I finally received the results of the anti-MAG IgM test for March. At first I was disappointed because it looked like the number went back up to 15.12 (see graph posted 3/8). But then I realized results came from two different labs. Now I consider the data as inconclusive.
I am scheduled for my second series of Rituxan starting April 18.
Here is something that may be of interest to all you “anti-MAG IgM people”, namely Allaug and Andrew. It is from a book that unfortunately costs $200:[I][B] Immunological and Infectious Diseases of the Peripheral Nerves By Norman Latov et al[/B][/I]. it has interesting chapters on MGUS and antiMAG. I copied one of the paragraphs that was especially of interest. According to it B-cell capable of producing antiMAG antibodies are already present at birth. T cells could possibly play a role when a B-cell clone gets out of control. This would raise the question of a possible infection as the trigger.
You can look at the pages at:
Hello Andrew. Welcome to the family. Several of us on the forum have AntiMag IgM including myself. As you probably know, this variant of CIDP ( sometimes called PDN – paraproteinaemic demyelinating neuropathy ) is a very slowly progressing form.
Mine started with slight numbness in my toes back in 2001. Now, I can no longer drive. I have to use a rollator to walk and balance because my feet are totally numb and there is some numbness up to my knees.
About a year ago, my fingers started going numb too. Today, I can only hold a cup if I use both hands. I drop things all the time. I cannot put caps back on medicine tubes, type, or do any fine motor work at all. For typing, I now use a dictation program called Dragon Naturally Speaking. In addition, my tongue is getting numb.
I’ve been trying to get Rituxan for about 2 years but insurance would not pay because, here in the U.S., it is only approved for Non-Hodgkin’s Lymphoma or Rheumatoid Arthritis.\
About 2 years ago my neurologist sent me to see an oncologist in Denver to rule out Waldenstroem’s, a slow growing form of lymphoma. This can sometimes be the underlying cause of AntiMAG IgM. Back then, the oncologist could not find enough evidence to confirm it, but suspected that evidence would develop.
Just a few weeks ago, I saw another oncologist here in Fort Collins where I live. After many blood tests, he did a bone marrow biopsy and found lymphoma…not significant enough yet to be Waldenstroem’s, but enough to show that cancer is my underlying culprit. After that, he ordered a PET scan to check for any metastasized cancer.
It came back negative.
He was then able to get approval for Rituxan which I will be starting on Monday. I am really hopeful that the treatment will bring an end to my now quickly worsening symptoms. I am aware that there are a number of reports of success with Rituxan but it doesn’t work all the time.
It may be too late for my feet. If the nerve axons are damaged they may or may not grow back. I am hoping that at least my tongue and hands will improve.
So, hope this gives you some information you were looking for. If you want to read more of my story in detail, there is a link below with my signature. Keep us posted about how you are doing.