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!
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My Husband was dx with AntiMag IgM at age 64 in 2010. This was 3 years after having a severe case of shingles on his R flank area. His PMD thought his R leg weakness and numbness in his foot was a post herpetic nerve issue. There never was any pain. After 3 years he got up one morning and fell down he had no feeling in R foot and ataxia. We immediately went to a neurologist and after MRI and lots of lab work. The dx was made when everything was negative except Antimag IGM titers. We were referred to Mt Sinai in New York to see Dr Simpson a neurologist specializing in neuropathies. He took one look at my husband reviewed the lab work and electrophysiology tests done on his legs and arms and said your only choice of treatment is Rituxin. In July 2011 he had 4 single weekly doses of Rituxan. We just went for his 8 month visit post therapy for another electrophysio test. There has been no improvement BUT no progression of his symptoms. We are now going to go back to Mt Sinai and review a plan of care based on these facts. I would like to keep you informed on progress. My husband is 66 still drives and works part time 3 days a week. Everyone says the shingles had nothing to do with triggering the autoimmune response in his body but who really knows. We had to pay for the Rituxan ourselves but I work at a hospital and was able to get the medication at their cost STILL very expensive. This was not covered by insurance because the FDA does not approve this drug for this dx. I will keep you informed of our next step. Good luck to your husband also.