Quote:
Originally Posted by NancyKay
Hi Laura,
I was diagnosed with anti-MAG neuropathy 7 years ago. My symptoms started with numbness in my finger tips and toes and weakness in my legs (falls). I went to a neurologist who ran a lot of blood tests and EMG/NCS. It turned out that I had elevated IgM and anti-MAG auto-antibodies. The NCS showed slow nerve conduction. I wasn't diagnosed with anti-MAG peripheral neuropathy until I saw a neurologist at a large research facility who had taken care of other people with this condition. I was started on IVIg which helped for a number of years. The symptoms have progressed slowly over the years to burning in my feet and hands when they get warm, balance problems and coordination problems. I haven't had any treatments after the IVIg became ineffective (about 2 years ago). I was 46 when diagnosed. You are very young to have anti-MAG peripheral neuropathy. I hope you get a diagnosis soon and good treatments. In comparison to other autoimmune conditions - this one isn't so bad. Let me know what you find out and what treatment you get.
Blessings to you! NancyKay
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Thanks so much for writing back, also. I am still waiting for the official diagnosis, results of the lumbar puncture and spine/neck MRI should be back today but my MD is off until Monday, so a weekend of waiting (and worry) is ahead. I am getting a second opinion as well, which is already scheduled, but I feel like the Dr. I am seeing just wants to treat symptoms at this point, he has admitted this is not something he has seen often and the progression has been very fast in the last few weeks. I am just waiting for the offical diagnosis. What other tests were run and led to your diagnosis? Mine started with just the weird sensations and falling asleep feelings but its rapidly gotten life disrupting. Does yours get a lot worse at night? Dropping things? Have you had much motor involvement or just sensory? Sorry for the barrage of questions, its a rare thing and nobody that I talk to has heard of this. I work in OB/GYN and even the MD's I work with are completely unaware of this. Thanks for your time, I will let you know what treatments and official diagnosis they hand me.
Hope you're doing well.
Laura