So - have had PN for 4 years now. Spent the first 3 years frantically looking up everything related on the internet, having every blood test and nerve test known to man including nerve biopsy, 2 lip biopsies, 3 MRI's, a muscle biopsy, a spinal tap, etc etc. Haven't been on this site for almost a year now as I have almost completely given up. Nothing has come up positive except demylenation but not enough for a diagnosis. I have seen countless doctors and they are all very nice and send me for more and more tests - but NOTHING. Thank goodness I am in a slow decline, not a rapid one, but still - aarrgghhh. I have been ignoring it for the most part for the last year, but everyt time I see my neurologist and go for another round of pointless tests I go into a bit of a tail spin.

So - I am not expecting anyone to tell me anything brilliant, just having a late night meltdown :-)