Reply To: Axonal Guillan Barre (AMAN)

January 3, 2017 at 10:47 am

Hi Helga … I believe I’m in a similar situation. I had very gradual progress for many years with nerve pain in my toes and left hip. Suddenly a year ago pain accelerated in feet and legs, back and hips. Three EMG’s over the past yea show axonal dying back that is actually neuromuscular: my calf muscles continue to shrink even though I am walking and working out as much as possible.

I am told there is nothing to be done, except hope that I don’t experience another “accelleration”. They did not diagnose it as AMMAN. We tried one round of IVIG (which the insurance company is refusing to pay). I did improve a couple of weeks later but was told by two nuero’s that “there’s no point in continuing”.

I am very weak in legs and core and balance is very poor. Numbness from toes to knees is severe (feet feel like cardboard when I tap them together). I got off of the pain killers and keep my mind busy to deal with the pain and weird sensations. I highly recommend physical therapy … it really and truly helps you feel more normal and you CAN improve your balance.

Has this affected your hands? I am dropping things like crazy and everything feels very smooth. Also, get very severe cramping in fingers and have sore thumb joins that fluctuate between mild and severe pain.

Thanks in advance for any info … and wishing you the best!