CeCe,
Your symptoms sound so much like mine. I was dx'd in 2008. Mine got worse very quickly but I did not have the muscle weakness until last year. Difficulty going up the stairs, blow drying my hair etc.
Thank goodness it is not consistent. Hopefully, it will be the same for you. My IVIG RX's really help me with this.
Hope you get the answers you are looking for from your neurologist!!