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anti MAG peripheral neuropathy

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Unread 06-24-2009, 02:04 PM   #1
wyngaerde
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Default anti MAG peripheral neuropathy

Hello. My husband was diagnosed with anti MAG peripheral neuropathy on May 12, 2009. His anti MAG count is 110,000. He begain having symptom 2 years ago, starting with numbness in his toes on his right foot. He now has numbness and weakness in his toes, foot, and ankle on his right side and is beginning to have numbness in his toes on his left side. We are seeing his neurologist again on July 14 to discuss treatment with rituxan. We have read about its side effects, effectiveness, and high costs. We would like to hear from anyone who has experience with this illness. Does it always progess to wheelchair confinement and, if so, in what timeframe? Is it better to have treatment earlier or later? We appreciate your feedback. Thank you.
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Unread 06-24-2009, 03:15 PM   #2
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Please come to our Peripheral Neuropathy forum
http://neurotalk.psychcentral.com/forum20.html

There are some who have this...although they don't post every day. Be patient when you post there.

There is one person on Rituxan also. Her ID is Raglet, and she will see your questions if you mention the drug.
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Unread 06-24-2009, 04:51 PM   #3
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Hi wyngaerde,

Welcome to the Neurotalk forums!
I am sorry your husband has had to deal with this. You, too, of course!
I deal with neuropathies, too. I am far from a neuropathy expert!
(I have other issues, too, and am on other forums.)

The participants in the neuropathy forum are very well-informed. A fantastic group! The forum can move more slowly, at times. Hope you can be patient; I really think it will be well worth your while!

You have likely seen many other forums here, as well? Please do feel free to "jump in" on any forum of interest to you! Make yourself at home! This is a friendly, supportive and a very healthy site.

Hope to see you around!
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Unread 06-24-2009, 08:35 PM   #4
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Welcome

So about the bad news. I'm not sure what that is.

It's good you two have each other.
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Unread 06-25-2009, 09:45 AM   #5
MDoughty
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Originally Posted by wyngaerde View Post
Hello. My husband was diagnosed with anti MAG peripheral neuropathy on May 12, 2009. His anti MAG count is 110,000. He begain having symptom 2 years ago, starting with numbness in his toes on his right foot. He now has numbness and weakness in his toes, foot, and ankle on his right side and is beginning to have numbness in his toes on his left side. We are seeing his neurologist again on July 14 to discuss treatment with rituxan. We have read about its side effects, effectiveness, and high costs. We would like to hear from anyone who has experience with this illness. Does it always progess to wheelchair confinement and, if so, in what timeframe? Is it better to have treatment earlier or later? We appreciate your feedback. Thank you.
Hi My husband has also been diagnosed with anti MAG neuropathy. His count is now 300,000 and climbing. We have tried rituxan, plasma infusions all to no avail. The rituxan was $6000 per treatment and now his insurance is refusing to cover it. For the last year, he has been wearing leg braces ALL day. He has numbness in both legs up to his knees making walking, stairs very difficult. His legs are very slender now as there seems to not be many muscles left. We have been to three different cities, Austin, Dallas, Houston - looking for the right neurologist but everything seems to be a dead end - meaning there doesn't seem to be a treatment for my husband that is going to be effective. They are monitoring his blood to check for cancer cells and luckily his bone marrow biopsy came back clear last month. We are hoping he will be able to continue walking with braces, but his doctor has told him to start considering other options.
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Unread 06-26-2009, 05:12 PM   #6
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Welcome to you both. Sorry for your need to find us.

HOping you can find some help here.

Donna
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Unread 06-27-2009, 10:35 AM   #7
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Hello wyn, and welcome to NeuroTalk! We are so glad you found us!

This is such a nice place with lots of caring, friendly and helpful people.

I'm sorry about your husband, and I hope both of you can find answers.
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Unread 09-05-2009, 04:45 PM   #8
NANCY W.
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Quote:
Originally Posted by wyngaerde View Post
Hello. My husband was diagnosed with anti MAG peripheral neuropathy on May 12, 2009. His anti MAG count is 110,000. He begain having symptom 2 years ago, starting with numbness in his toes on his right foot. He now has numbness and weakness in his toes, foot, and ankle on his right side and is beginning to have numbness in his toes on his left side. We are seeing his neurologist again on July 14 to discuss treatment with rituxan. We have read about its side effects, effectiveness, and high costs. We would like to hear from anyone who has experience with this illness. Does it always progess to wheelchair confinement and, if so, in what timeframe? Is it better to have treatment earlier or later? We appreciate your feedback. Thank you.

Good morning. I had the same beginning symptoms 10 years ago, which gradually worsened so that I had "drop foot" and walked awkwardly (like dragging through mud) and lost varying degrees of muscle strength in feet, ankles and legs. I had been under the impression that there was nothing to be done,(i was told this way back when) but I finally got a referral to neurologist at a large teaching hospital in Portland, Oregon. Since April I have had 13 treatments of plasmapheresis via a subclavical port and I have regained some feeling and strength. Very subtle improvements - not overnight sensations. Dr. is now suggesting future treatment of Rituxan -- which came as a surprize since I was seeing improvment with plasmapherisis and had expected to stay on it for many more months by having a fistula installed.

I send this information along to you and hope that other folks with antiMAG will respond to both of us with their experiences. Regards, Nancy W.
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Unread 09-06-2009, 11:35 AM   #9
NANCY W.
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Quote:
Originally Posted by wyngaerde View Post
Hello. My husband was diagnosed with anti MAG peripheral neuropathy on May 12, 2009. His anti MAG count is 110,000. He begain having symptom 2 years ago, starting with numbness in his toes on his right foot. He now has numbness and weakness in his toes, foot, and ankle on his right side and is beginning to have numbness in his toes on his left side. We are seeing his neurologist again on July 14 to discuss treatment with rituxan. We have read about its side effects, effectiveness, and high costs. We would like to hear from anyone who has experience with this illness. Does it always progess to wheelchair confinement and, if so, in what timeframe? Is it better to have treatment earlier or later? We appreciate your feedback. Thank you.
I posted a reply to you yesterday, but should have included the info about EXERCISE. Until my port was installed in april, I swam laps 3 times a week and really worked my legs and feet as hard as I could to keep the muscles in good shape. Often I would hang off the side of the pool and just kick hard. I really believe that it has helped me a great deal in keeping me going before I ever had treatment and now that I am experiencing some improvement from pherisis those muscles are ready to be used again.
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