Paul and Jocelyn,
My dear friend Sandie has Lumbar Sacral Radiculoplexus Neuropathy which is very similar to what you are dealing with but it is in the lower extremities where yours is in the upper. She is in excruciating pain. I am so sorry that you are dealing with this awful condition.
I am actually very surprised that you got this diagnosis so early on, it seems Sandie went to doctors for what seemed like a year before they figured it out. Her condition apparently has a lifespan of 2 years so at least there is an end in sight for her.
Get a neurologist and physical therapist! I have asked her if you can speak to her, I think it would be very helpful.
Are you mega dosing on the turmeric w black pepper? Like 2 capsules 2-3 times a day? I got this super deal at the evil amazon:
Sending much love from Bellingham,