Anti-mag neuropathy

[Leever]

I have had anti-mag neuropathy for about eight years, mainly numbness in my lower legs and now progressing to my hands. I was treated with rituximab a few years ago with some success. Today I received the results of a blood test that is not good news. My neurologist is talking about another round of rituximab but I'm not sure how it will be paid for. I have shared information about my condition on this blog: ** Feel free to check it out and or comment.

[rbwalton]

Leever, your link did not make it- You have to have a certain number of posts before your links get published. Anti mag neuropathy was a new one for me. I had to search to see what it involved and found a thread on Neurotalk about it.

http://neurotalk.psychcentral.com/thread27718.html

I have had anti-mag neuropathy for about eight years, mainly numbness in my lower legs and now progressing to my hands. I was treated with rituximab a few years ago with some success. Today I received the results of a blood test that is not good news. My neurologist is talking about another round of rituximab but I'm not sure how it will be paid for. I have shared information about my condition on this blog: ** Feel free to check it out and or comment.

[jrip]

I have had anti-mag neuropathy for about eight years, mainly numbness in my lower legs and now progressing to my hands. I was treated with rituximab a few years ago with some success. Today I received the results of a blood test that is not good news. My neurologist is talking about another round of rituximab but I'm not sure how it will be paid for. I have shared information about my condition on this blog: ** Feel free to check it out and or comment.

I am a 75 year old male. I, too, have anti-mag neuropathy dating back about 10 years. Numbness in lower legs and feet has affected my balance to the point where I walk with a cane. Have had muscle wasting. The head of the neurology dept. at Virginia Mason in Seattle calls my neuropathy "bad." I had a once a week infusion of Ribuximab for four weeks about 6 weeks ago. I know this has helped some, but so far I've noticed no improvement. Medicare and my supplemental insurance paid for it. It's quite expensive. There doesn't seem to be much else I can try. I'm glad you had some success with Rituxan and hope it works for you again.

On the bright side, I have little pain and am still able to boat and fish.

[NancyKay]

I am a 75 year old male. I, too, have anti-mag neuropathy dating back about 10 years. Numbness in lower legs and feet has affected my balance to the point where I walk with a cane. Have had muscle wasting. The head of the neurology dept. at Virginia Mason in Seattle calls my neuropathy "bad." I had a once a week infusion of Ribuximab for four weeks about 6 weeks ago. I know this has helped some, but so far I've noticed no improvement. Medicare and my supplemental insurance paid for it. It's quite expensive. There doesn't seem to be much else I can try. I'm glad you had some success with Rituxan and hope it works for you again.

On the bright side, I have little pain and am still able to boat and fish.

I'm sorry to hear that the Rituxan was not very helpful to you. I would like to try Rituxan, but my insurance (Aetna) doesn't cover the cost of this treatment for anti-MAG neuropathy. I haven't had any treatments since my last IVIg treatment in 2007. My neuropathy continues to slowly progress. I definitely have had balance problems with numerous falls. I have to really pay attention to what I'm doing, especially on uneven ground. I don't use a cane, but when I walk on trails, I use walking poles that really help me to balance. Who do you see at Virginia Mason? I have seen Dr. Ravitz. He has suggested plasmaphoresis and chemo. It sounds too risky to me.

I am also thankful that I don't have much pain and can still do most things.

[MAGLADY]

Hello anti mag person,

i also have anti mag..prob. 4 yrs. And i would love to chat..would like to hear more about your tests. My anti mag was 102,500 very high titers and my igm high...are these the tests you are refering to, the info on anti mag is terrible, most dr.s do not know anything about it, even neurologists...they say arms and legs, but my dr. Says distal...feet and hands...wrong..my feet, my calves, my legs, my arms, my wrists, my hands, my fingers, and more going on than maybe just mag.
Mag lady