|
Junior Member
|
|
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
|
|
|
Junior Member
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
|
Quote:
Originally Posted by CarolH
Granacki, this post is to you and any others out there with AntiMAG IgM.
In 2007, Granack posted a question seeking out others with AntiMAG neuropathy, but did not mention whether it was IgM, IgG or other related. Now, it is 2012. From you and from any other's with AntiMAG IgM, I am wondering how you are doing, how your symptoms have or have not progressed, and what treatments you have had.
My husband's symptoms began in 2001 at age 68. In 2005 was diagnosed with CIDP variant - AntiMAG IgM polyneuropathy and 2 years later with a benign form of NHL or paraproteinemia / Waldenstrom's (exact diagnosis was never completely clear but bone biopsy allowed him to get Rituxan) He had 2 years of steady IVIG treatment followed by 2 full rounds of single dose (not double) Rituxan. Neither helped much.
His disability remained fairly steady from 2007 to 2011 - difficulty walking, fatigue, numbness (toes to knees & hands), ataxia, no pain, proprioceptor nerve damage, sensory nerve damage, and likely later axional damage. He has required use of a powerchair most of the time but can manage walking short distances with a rollator. Cognitive functions are intact.
Now, however, he seems to be developing neurogenic bladder retention problems. We fear it might be related to his neurological problems. Our University of Washington neurologist predicted possible (in a certain % of patients) problems with the diaphragm but not bladder/bowel issues.
Now soon to be 79, we would like to compile information that has never been available to us about long term impact of AntiMAG IgM. We hope that it will serve as a guide to others with this disease, helping them plan their lives and activities more effectively.
To this end, we appreciate updates here from all AntiMAG IgM people regarding their ages, gender, symptom onset and progression, treatments and contact with other AntiMAG IgM people who might want to add their information here.
As much as we appreciate support and contact from people affected with other forms of CIDP, etc., we would prefer to reserve this post to people specifically diagnosed with, or who wonder about having AntiMAG IgM.
Thanks to you all!
|
Hi Carol,
I was diagnosed with anti-MAG IgM peripheral neuropathy in 2001 at the age of 46. My initial symptoms included balance problems (falls) and sensory loss in finger tips and toes. I had several years of IVIg treatments that seemed to benefit me. After about 4 years, I did not find them beneficial, so I did not have any treatment until 2011 when I had a round of weekly Rituxan infusions for a month. I was very hopeful that I would notice improvement, but I did not. Thought about another round of Rituxan, but neurologist did not think it would be helpful. At the age of 58, my current symptoms include: ataxia, tremor in hands (right worse than left), burning sensation in feet after walking for a while, numbness of fingertips, and legs from below the knees to tips of toes. I continue to work, but find that I need to think about my walking (to prevent falls) and my keyboarding is slow. My grandmother and my mother both had different autoimmune diseases. It seems that with each generation, the autoimmune problem comes at a younger age. Hope this helps.
NancyKay
|