My husband (50 years old) was misdiagnosed at the age of 35 with CMT - Charcot Marie Toothe disorder. One year ago, after blood testing, it was discovered that he had an anti-mag count of over 96,000 (normal range 1,000 or below). In his 30's, his hands started shaking and he felt some tingling in his feet. Over the past two years, it has now progressed to complete numbness in his feet up to his knees. He has to wear braces on his legs if he plans on walking for extended periods. Last Nov. he was treated with four rounds of Rituxan, with no results. He will begin IGIV treatments in December. Has anyone else dealt with this?

Hello, MDoughty, welcome to NT.

I'm sorry to hear of your husbands troubles. I'm sure you'll get the information you want and the emotional support you both need.

I see that his case was mismanaged for years, but what is the new diagnosis? I (and others) would be happy to give you a link to the proper forum if I had a few more details.

Best of luck to you and your hubby.

Rogue

his new diagnosis is "demyelinating polyneuropathy because of high anti mags".

--that your husband was misdiagnosed like that, especially as an anti-MAG (and anti-SGPG) antibody titer should be performed on anyone with symptoms of sensory neuropathy.

Unfortunately, anti-MAG tends to be among the more recalcitrant of neuropathies; research is ongoing as regards immunodulating treatments, but these, of course, have their own problems.

Take a look at:

http://www.neuro.wustl.edu/neuromusc...imdem.html#mag

And, come on over to the neuropathy forum:

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

--at the very least, there will be much empathy and numerous suggestions for symptom mitigation.

do you have any info as to the likelihood of the IGIV treatments improving his condition?

MDoughty,

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.

Again welcome, looking forward to seeing you around.

Darlene

Welcome McD!

Hi, McD! Welcome to NeuroTalk!

Your hub's issues sound awful, I'm sorry to learn of this. Please ask around, everyone here is friendly and supportive.

((MDoughty)) I'm so sorry about your husband's years of misdiagnosis. But I'm very glad you found this caring and supportive community.

HI

I hope this helps

Peripheral Nerve Disorders

I think what we have here is a peripheral nerve disorder and without stepping on anyone's toes in the medical profession, you need to look at what causes the peripheral nerve disorder. I think time release B5, (Calcium Pantothenate) would repair the myelin sheath to some extent. It could be a deficiency in your diet, something like spirulina would be more a more long term solution. Calcium Panto is water soluble so needs to be replaced every day. It's the time release version you want though, Hope this helps to some degree.
Find the cause, it could be nerve compression or damage after an injury.

Love and Light
Shapeshifter