[Granacki]

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?

[Darlene]

Granacki,

Hello and welcome to NeuroTalk. You will find a great number of people here to share comfort and assistance. Looking forward to seeing you around.

Darlene

[Alffe]

Welcome to NeuroTalk Granacki...I'm not familiar with your dx but here is the link to our PN forum....perhaps someone there with have more info for you.

http://neurotalk.psychcentral.com/forumdisplay.php?f=20

[AfterMyNap]

Hi, Granacki!

Welcome to NeuroTalk!

I've never heard of your condition either, but if you follow the link provided by Alffe, you may find some folks who know about it. Do let us know if we can help you with anything.

[jim5723]

Hello Granacki,

I, too, have been diagnosed with anti mag neuropathy. It started in my mid fifties with a slight tingling of my feet and gradually progressed to the burning, tingling, numbness point. I am now 64 and have experienced significant loss of muscle mass in both calves. I do not have any significant pain but have experienced tremors in both hands but little or no numbness. Balance and muscle weakness are my biggest problems and I must be very careful not trip over even the smallest obstacle.

In 2007, I started 10 months of plasma pheresis(two days a month on successive days) and chemotherapy (after the second day of plasma pheresis). The drug was Cyclophosphamide and it did cause 2 or 3 days of feeling poorly (each month).

My physician, Dr. Ravits at Virginia Mason in Seattle, indicated that my protein levels after the treatment were within the normal range. However, I cannot tell if there has been any change in my condition. I doubt that it improved and if it has deteriorated, it is probably minimally.

I was very active in sports prior to this problem and have pretty much given up every sporting activity. I do plan on getting back to golf this summer and hope I can walk rather than ride a cart.

Let me know how things are going for you.

Jim Perkins

[(Broken Wings)]

Hi, and welcome to NT

I do not know the dx you're suffering from. I'm so sorry you have this to deal with.

Looks like you've found a buddy already. It helps just to know someone else understands what you're going through because they've been there.

This is a wonderful place for healing and friendship.

See you two around the board...

[wyngaerde]

My husband was diagnosed in 2009 at age 55. His symptoms began in 2006 with numbness in his toes and, like yours, has now progressed to numbness and muscle atrophy in his feet and calves. Balance, weakness, and tripping are also his biggest problems. Since June, 2010, he has developed drop foot in both feet and is wearing orthotics on both legs. We recently saw a new specialist at Barnes Jewish Hospital in St. Louis who strongly recommends rituxan therapy. He said it most likely will not reverse the symptoms but should stop the progression. At this point Blue Cross is unwilling to pay for the treatment. We are concerned about the side effects of the treatments, but he would like to stop or slow the progression.

I was so thankful to see your letter. We don't know anyone with this illness. I was happy to read that the treatment you had has stopped your progression. Are you continuing to have the chemotheraphy treatments? Are you familiar with rituxan? We would appreciate hearing from you and hope you are continuing to do well.

Jill Tucker (aka wyngaerde)

[NANCY W.]

Originally Posted by wyngaerde

My husband was diagnosed in 2009 at age 55. His symptoms began in 2006 with numbness in his toes and, like yours, has now progressed to numbness and muscle atrophy in his feet and calves. Balance, weakness, and tripping are also his biggest problems. Since June, 2010, he has developed drop foot in both feet and is wearing orthotics on both legs. We recently saw a new specialist at Barnes Jewish Hospital in St. Louis who strongly recommends rituxan therapy. He said it most likely will not reverse the symptoms but should stop the progression. At this point Blue Cross is unwilling to pay for the treatment. We are concerned about the side effects of the treatments, but he would like to stop or slow the progression.

I was so thankful to see your letter. We don't know anyone with this illness. I was happy to read that the treatment you had has stopped your progression. Are you continuing to have the chemotheraphy treatments? Are you familiar with rituxan? We would appreciate hearing from you and hope you are continuing to do well.

Jill Tucker (aka wyngaerde)

Hello, Jill. I have posted here a few times but not since I had the Rituxan treatments in September, 2010. My dr. at OSHU has told me that nerves DO HAVE THE ABILITY TO REGENERATE especially those which were most recently attacked. (I experienced improvement last year when I was given plasma pherisis treatments.) At the very least, the Rituxan has halted further nerve injury in many cases. So I am waiting to see and hoping for the best.

Try contacting the Rituxan manufacturer - they have a program to provide the drug if you qualify.

Hope you will post further news of your husband's situation.

Regards, Nancy W.

[Connan]

Nancy

I have been trying to contact you on the other anti-mag post.... I will start Rituximab in Jan... I wanted to see if you see any improvement yet after completing the Rituximab treatments.

Bob

[EDELSTEP]

Originally Posted by NANCY W.

Hello, Jill. I have posted here a few times but not since I had the Rituxan treatments in September, 2010. My dr. at OSHU has told me that nerves DO HAVE THE ABILITY TO REGENERATE especially those which were most recently attacked. (I experienced improvement last year when I was given plasma pherisis treatments.) At the very least, the Rituxan has halted further nerve injury in many cases. So I am waiting to see and hoping for the best.

Try contacting the Rituxan manufacturer - they have a program to provide the drug if you qualify.

Hope you will post further news of your husband's situation.

Regards, Nancy W.

Dear Nancy,
How are you doing?
I was just dx with anti mag neuropathy and the doctors all want to start me on Rituxan. They did not even discuss plasma phersis. Have you seen any improvement?