again long delay sorry,
Im interest to hear about leichen and B12/

I will look into this/ I am doing alot of flax oil, primrose oil and fish oils
as well as a heavy exercise program/ typing is slow tingling fingers and ataxia

Im still doing well but its slow and progressive/ feet numness and burning is hard at the end of the day/

i am going to look at Interferon as well/ ive heard some good/bad stories


my neuro is just watching and waiting??
hard to know what to do
any news at your end

I was diagnosed with anti-MAG neuropathy in 2002. I was successfully treated with IVIG until 2007. It didn't seem to bring any improvement, so I quit getting the treatments. I am doing OK, as long as I don't get hot or walk or stand too long. I am now living in the Pacific Northwest where it is cool and I am only working part time. I have some balance problems and some coordination problems, but otherwise function pretty well.

How are you doing?

Hey out there, you are not alone. I am very open to share story.
Steve Short

Actually, in my experience, rituxan really isn't very toxic, especially in comparison with some of the other immunosupressants that are truely horrendous. I have had many years of iv cytoxan which supresses the entire immune system (basically it's chemotherapy) and have been delighted to switch over to rituxan about 2 1/2 years ago. Rituxan is very much more specific, it just depletes my b cells rather than hammering my entire immune system, which is just great. Cytoxan made me really really ill, rituxan, although it is still a form of chemo, doesn't, as it is so targeted and just takes out one part of my immune system.

Obviously no one would want to have any of these treatments unless they absolutely have to, but for those who have to then rituxan is definitely the way to go although it is very expensive and difficult to get funding for. Everytime I have it (two infusions) it is $20,000.00 which is pretty out there really. My b cells are again on the way back, so I will be having another round of rituxan sooner or later.

I don't have Anit-MAG, but have lupus which is also an autoimmune condition and has given me a lot of problems with PN (sensory and motor). B cells are involved with the production of antibodies which then attack me, so depleting my b cells really helps.

hth

raglet

Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.

I have recently been diagnosed with MAG neuropathy, are you still out there and interested?

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.

I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady

".............I wonder if you are still on this site......."

I doubt it

Hi Maglady,

How amazing that you have anti-MAG neuropathy and stayed on Lummi Island! I am 54 and have been diagnosed for about 8 years. I've gone down to Virginia Mason Hosp. to see a neurologist there. I'm not currently receiving any treatments, but would like to try Rituxan. Let me know what you are receiving in the way of treatment and where you are going to get it.

NancyKay