[CarolH]

In 2007, Granack posted a question seeking out others with AntiMAG neuropath, but did not mention whether it was IgM, IgG or other related. Several people responded to his post. People with this rare subgroup of a rare disorder have little knowledge or understanding of the progression of this disease. In order to improve this situation, we are asking for your help here on this post.
Now, it is 2012. My husband and I are wondering how you any of you with AntiMAG Igm 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 he 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) Steriods were disasterous for him, causing several ataxia and imbalance. He had 2 years of steady IVIG treatments followed by 2 rounds (2 years) of single dose Rituxan (not double dose, which may be more beneficial.) Nothing 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. Since 2007, 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 and possible bowel problems. We fear these might be related to his AntiMAG IgM problems. In 2009, his University of Washington neurologist said my husband's was the worst case he had ever seen of CIDP but acknowledged that in a certain % of patients seem to develop blems with the diaphragm. Bladder/bowel issues were not mentioned.

Now soon to be 79, we would like to compile here on this post, information that was not available to us when we started out - 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. We also hope it might be useful to researchers and medical professionals who seek to help us.

To this end, we would appreciate yearly 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!

[michaeljay]

its been a awhile since I checked in.

was diagnosed about 6 years with anti-mag Igm/ it was progressing fast.ataxia, numbness/walking issues typing etc.
was treat 4x with rituxan but no change in numbers. then went on an aggressive (very) anti inflammatory diet/ nuts berries vegs. with alot of supplements fish oil etc/ as well as alot of turmeric. i am also heavy into gym/ swimming, biking etc.(I ran a mile this morning)
anderson cancer center doing work on turmeric

some 6 years later im pretty strong. and staying front of this. i think the diet and turmeric is working. be interested in trading info

Originally Posted by CarolH

In 2007, Granack posted a question seeking out others with AntiMAG neuropath, but did not mention whether it was IgM, IgG or other related. Several people responded to his post. People with this rare subgroup of a rare disorder have little knowledge or understanding of the progression of this disease. In order to improve this situation, we are asking for your help here on this post.
Now, it is 2012. My husband and I are wondering how you any of you with AntiMAG Igm 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 he 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) Steriods were disasterous for him, causing several ataxia and imbalance. He had 2 years of steady IVIG treatments followed by 2 rounds (2 years) of single dose Rituxan (not double dose, which may be more beneficial.) Nothing 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. Since 2007, 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 and possible bowel problems. We fear these might be related to his AntiMAG IgM problems. In 2009, his University of Washington neurologist said my husband's was the worst case he had ever seen of CIDP but acknowledged that in a certain % of patients seem to develop blems with the diaphragm. Bladder/bowel issues were not mentioned.

Now soon to be 79, we would like to compile here on this post, information that was not available to us when we started out - 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. We also hope it might be useful to researchers and medical professionals who seek to help us.

To this end, we would appreciate yearly 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!