[NancyKay]

I was diagnosed with anti-MAG neuropathy 7 years ago (at the age of 45). It wasn't until I saw a neurologist at the University of Iowa Hospitals that I received a diagnosis. It took about 6 months from the time I saw the first neurologist until I found one who knew about the condition. I was started on IVIg and had good results initially. After 6 years, the IVIg doesn't seem to be helping so I have stopped. Since moving from Iowa I am now going to a neurologist who hasn't treated anyone with anti-MAG before.

My balance is pretty good as long as I think about what I am doing and don't rush. My legs aren't strong anymore, but I can walk pretty well. If I am on my feet too long, my feet go completely numb. I am rather clumsy with my hands - drop things and can't coordinate fine motor movements. My feet burn terribly when they get hot. Now that I live in a cooler climate, my feet feel better.

That's about it for now. I hope there are others who can share their stories. Not too many of us around - I don't know anyone else who has this disorder.

[ali12]

Hey,
Welcome to Neurotalk, I am so sorry about the problems you are and have had. If you need anything just ask - I will try and help you if I can.
thanks and welcome onboard

[glenntaj]

You're quite correct in that there are not too many people out there who have that type of neuropathy, although I think there may have been a few fluttering around our neuropathy forum here from time to time, which I highly recommend you visit (if you haven't already):

http://neurotalk.psychcentral.com/forum20.html

There's certainly a wealth of information there that is applicable to any autoimmune neuropathy--and a lot of empathy besides.

BTW, make sure they also monitor you for rogue monoclonal antibodies, which are often associated with anti-MAG--these are usually ascertainable through immunofixation electrophoresis. The reason, unfortunately, these need to be watched is they can be the precursor of certain types of blood disorders:

http://neuromuscular.wustl.edu/over/labdis.html#mag

http://neuromuscular.wustl.edu/antib...imdem.html#mag

[NancyKay]

Thanks for the welcome and suggestions. About 5 years ago I had a bone marrow biopsy to make sure I didn't have any signs of Waldenstroms macroglobulinemia (which my Uncle died of in his late 40's). So far, so good.

Originally Posted by glenntaj

You're quite correct in that there are not too many people out there who have that type of neuropathy, although I think there may have been a few fluttering around our neuropathy forum here from tiem to time, which I highly recommend you visit (if you haven't already):



There's certainly a wealth of information there that is applicable to any autoimmune neuropathy--and a lot of empathy besides.

BTW, make sure they also monitor you for rogue monoclonal antibodies, which are often associated with anti-MAG--these are usually ascertainable through immunofixation electrophoresis. The reason, unfortunately, these need to be watched is they can be the precursor of certain types of blood disorders:



url]

[Darlene]

Nancy,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can. Just let us know how we can assist you.

Again welcome, looking forward to seeing you around.

Darlene

[MSCherokee]

Hello NancyKay and welcome to NeuroTalk!

[DM]

Hello NancyKay and Welcome to our neck of the woods. So glad to have you with us. You will love it here...

[dreambeliever128]

Welcome to the group.

I see you have been directed to the right forum to help you. You might want to also check out our Depression forum. A lot of times we deal with depression along with the pain we deal with. It all overwhelms us at times.

You will find a lot of good support here. I hope you stick around.

Ada