February 1, 2017 at 3:57 pm
We are very much alike. I was diagnosed it back in May 2014. I spent two months bouncing between hospitals and acute rehab and then another two months in subacute rehab. I came home when I was only a one person transfer between the bed and the wheelchair. Been in a few months I was using a walker and then a cane and two weeks ago I had no problem walking in the New York City Women’s March. It was only a mile, but I was on my feet for about eight hours. But round doorknobs and pencils are useless to me. Some places the damage was to the axons and in others it was the sheeths which are mostly healed by nowJuly 1, 2016 at 1:28 pm
My axonal neuropathy took about a month to paralyze me so I don’t know if that sudden or gradual but I was also told that there are no treatments. Just a slow recovery with physical therapy and decent nutritionJune 7, 2016 at 4:11 pm
I’m in New York and my neurologist is at NYU.
And I’m sorry about my avatar I guess I have to change that if I can figure out how.June 7, 2016 at 4:07 pm
I don’t know. I have been diagnosed with AMAN and that means I have damage to the motor axons only. With the exception of a couple days of acute pain when this all started I have never had any sensory issues. So my neurologist told me that IVIG would not be useful, because those infusions are helpful in that they stop the progress of the demyelination.
But if your symptoms are progressing IG might help.November 21, 2015 at 7:18 pm
If I haven’t mentioned it lately, I have acute motor axonal neuropathy. That’s a variant of Guillain-Barré syndrome. It’s so rare there’s no point in having our own Facebook page.October 3, 2015 at 10:32 pm
My name is really Michael
But I had two rounds of IV IG at my onset and they didn’t really seem to stop it. But some pretty special chemotherapy put a stop to increasing damage. My legs are healing faster than my hands. So posting is a courtesy to Dragon softwareOctober 1, 2015 at 5:04 pm
You found me. I have been diagnosed with acute motor axonal neuropathy. woot woot, I have a man