Reply To: Axonal Guillan Barre (AMAN)

I have not been officially diagnosed with AMAN, although some of my symptoms match those of the disease. My official diagnosis has been GBS/MFS/CIDP.

AMAN and similar variants are described here: http://www.neuropathy.org/site/DocServer/GBS-AlanBergerMD.pdf?… It is also discussed here: http://www.gbs-cidp.org/wp-content/uploads/2013/02/AcuteCareICU13.pdf

During my initial attack in 2008 my paralysis started around my waist and went up and down from there to my extremities. This, I am told, is not the norm for GBS. GBS typically starts in the extremities. I guess I just got a worse case attack because there were other variants involved, perhaps a bit of AMAN?

I became a quadriplegic and needed help breathing within 3 weeks of onset. Today I have progressed to be a paraplegic and cannot walk or stand. I have not seen any additional improvement for almost two years now. I suffer both myelin and axon damage.

IVIg did little for me as a treatment option; I think I became considerably worse during that treatment. Plasma Exchange helped greatly, but was started too late (after a lot of damage was already done) and I noticed some improvement 2 days after my first PE.

What has been your experience with IVIg and other treatment options?