Discourse on Pain….
One of my key issues has always been pain….altho how I tend to describe it is “noise”. It could be numbness that is hypersensitive, pins and needles in either or all of hands, feet, back, head…strong electrical shocks, jabbing pain in my torso, or most noisy of all…the chainsaw effect…in my hands, feet, at the joints in my ankles and wrists. Added together, they make a fairly painful stew. Docs tend to respond if you use good adjectives! 🙂
Anyway, what I have found thru research is that there are a number of CIDP variants already identified; and no doubt there will be more as time goes by. There is no commonly agreed diagnostic criteria – there are three “accepted” set of criteria, some more stringent than others.
The point of my post is that the thing that made me stop trying to get “another diagnosis”, was the fact that a great number of neurological diseases are notoriously difficult to diagnose, however, the range of treatments for alot of diseases are uncommonly similar, all the things that you talk about on this forum. Once you reach the point of PE, IVIG, neurontin for pain relief and they start talking about chemo therapy drugs — that’s all there is (for now).
My view is that each of us needs to find a combination of these things (along with physical activities) that works for us. Good luck, take heart and enjoy each day as much as you can.