Originally Posted by NANCY W. (Post 736481)

Good morning Jakatak. Thanks for posting the article on MGUS.

Just a word about being proactive about your diagnosis.
I was diagnosed with pn 15 or so years ago and went once a year to have a blood draw as directed. Diagnosis never changed but I slowly lost muscle use and feeling in legs/feet. Two years ago I finally insisted that i get a new neurologist and discovered that I had a condition (antimag) THAT COULD BE STOPPED AND IMPROVED.

I post this because I think there are probably lots of folks who aren't getting help because they aren't aware of this fairly new science.

Originally Posted by Joebuddy (Post 507422)

My symptoms started 3 years ago. I had numbness in my feet and big toes. I went to my family Dr who referred me to a neuroligst. He did a nerve conductance test that showed neuropathy in both legs & both arms. He ordered a spinal MRI (normal) and blood tests (normal). He said since my general heath is good at 65, no treatment and call him if symptoms worsened.
I was not satisfied with his assesment. Since I live near Johns Hopkins Hosp., rated best hospital in US for Neurology, I scheduled an appointment. The doctor was much more thorough in his exam and the nerve conductance test was much more envolved. He also did the blood test that showed the elevated level of Igm protein and explained the condition on anti-mag neuropathy. He reccomended that I see a hemotoligist for further testing. I
saw an excellent Dr at Mercy Hosp in Baltimore who put me through a skeletal survey, and a bone marrow biopsy. Both normal, no luchyemia. He suggested that I try the Rutxin infusions. I had a 4 week cycle of infusions, twice in 3 months. There were very little side effects.....a few chills, drowsy from the Benydril. It all goes away after the infusion. There was no improvement from the 8 infusions. I saw another Neurologist at Hopkins. He has been there 17 years and has traveled the world with Drs about this condition. I would imagine that he is a leading authority on this disease. My feet are getting worse, I see him again in June.

Originally Posted by Granacki (Post 146427)

Greetings all
I tried posting this under New member introductions and no one else with this condition responded so I'm posting it again here. I'm new and still a little murky on how to post things.

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?

Originally Posted by jrip (Post 744163)

My husband has had this type neuropathy for many years. He's now 76. Luckily he has no pain, mostly numbness esp. in feet. Recently (the past year) developed balance problems and walks with a cane. We tried the Rituxan infusion that has helped some, but it benefitted him hardly at all.
He has no problem bicycling and it's good exercise.

Originally Posted by EDELSTEP (Post 758021)

My husband had this type of neuropathy dx at 65 has had symptoms for 3 years. Luckily he has no pain, numbness in feet. Recently developed balance problems because of weakness in R foot. We are trying to get the Rituxan infusions but insurance does not want to cover our doctors are trying to write letters of medical necessity to the insurance company. Still waiting.
How did you get your approval for your infusions?

Originally Posted by Connan (Post 762857)

Nancy







It has been 10 weeks since the last of 4 Rituximab treatments.

I can now feel cold tile with my feet. I can also feel the depth of the pile when walking on carpet. My balance has improved significantly. I am no longer walking like a duck after falling asleep in the recliner. I can't believe it. I am still wearing "boots" except the feeling is just above the ankles and not mid thigh like it was 4 months ago. I hope these are all physical changes and not my brain making it up.
:D
Bob