@jerry48 Hi Jerry thanks for your reply. It is a relief to finally find others with similar symptoms and condition, however I am sorry you all have this condition. Anna has a very steady IgG level in UK figures 16 to 19 g/l, however her kappa free light chains have been steadily rising from around 50mg/l now to around 90mg/l, kappa lambda ratio now over 25 if I remember. Her symptoms suddenly got a lot when the FLC rose above 65. We have suggested that hers is probably light chain driven as this seems to be the active element but we struggle to get them to even check them. NCS/EMG is normal for Anna. We both really hope treatment works for you, let us all know how it goes. Thanks again for your reply.

@jerry48 Just had my kappa free light chains measured one month after starting the rituximab/bendamustine combo. The level went from 400 to 100 which was very encouraging.
I also was able to plantar flex my left foot enough to raise my heel up to about a normal level while standing on one leg. Right leg hasn't joined the party yet.
The 2 hematologists I have seen thought that any improvement in my PN could take 6 to 18 months once FLCs were lowered to normal. But this seemed to be partially guesswork because they hadn't dealt with, or rarely dealt with, a presentation like mine. Just hoping the progress continues.