I'm about exactly one year into my experience with PN. Started with pain in the toes and has continued to progress. Over the last 2-3 weeks, it's progressed into muscle weakness (shoulders and forearms are most notable) and various twitching muscles (again, mostly arms).

No diagnosed cause for any of this (i.e. still idopathic), but we've done lots of tests. Blood tests (including a repeat of a couple earlier ones) today and neck/spine MRI on Monday. Diabetes and pre-diabetes is eliminated as a possibility. Fine on B12, etc.

Questions for similar people:

Has anyone else had mostly pain-related PN progress into muscle weaknees?

If so, do they believe they've found the cause and/or what did they do about it?

Did the weakness ever stop progressing?

Thanks, as always.

You describe distal sensory issues + proximal weakness which is how CIDP affects the body. Did you have nerve conduction studies to check for demyelination?

I've had EMG tests twice -- once 9 months ago and again last week. He said that they didn't to be out of normal for someone with peripherial neuropathy. I'm not sure if that means demyelination is going on or not. I'll ask next time.

He ordered blood tests that seem to be looking for a set of antibodies and for thyroid issues.