Treatment in her case initially was IVIG. However, her venous condition deteriorated over time because of the frequency of infusion, so her treatment was changed to twice a week chemo consisting of subcutaneous injections of Vivoglobin which is given at home. More recently the treatment product was changed to Hizentra. You can search both of these products on line for many more details.
Physicians conversant with this condition and its treatment have been difficult for us to find. But, I encourage you to continue looking because of the importance of slowing the progress of the effects.
God Bless you both!
I should have mentioned: My wife has 12 rare diagnoses. The combination results in unbearable pain. I don’t know how much is associated with her neuropathy, per se. Fentanyl patches have been helpful in reducing the pain level from all her conditions to a tolerable level.
Again, Bless you both.