Remeber, there could be many many reasons for the PN......

I've been sick for 9 years now - but last year very rapid decline.... my cardiac system is also affected and I suffer daily multiple cardiac events and have to take meds constantly to control... my balance, loss of sensastion etc has gotten much worse, and due to gastroparesis (which is from the nerve damage) has much worsensed much to my chargrin for a girl who loves to eat - ensure and broth does not a big fat cheese burger make! The docs concensous now putting amyloid aside (they want to do another fat pad biopsy but I told them to hang on - because of the severity of the PN at this point I really wouldnt be candidate for any amyloid treatments anyway at this point other then what I'm already getting for guts and heart) is that the PN is genetic - the form they believe it is there is no current genetic test (Boston Mass is working on on) - but a "clinical" diagnosis based on several neuros who have seen me talking together, carfeullly going over nerve biopsies etc., and even though we tried high dose IVIG for over a year it did nothing - they were hoping I would respond even though I had no auto-immune markers and I felt better (I thought) a few days after each infusion) but in retrospect I think it was just relief from getting thru the weekly infusions - which I had many side affects with every infusion and really dreaded them (for those who IVIG works for - its wonderful - dont get me wrong!)...... Now they say there is nothing they can do and we're just working on trying to gain to some weight - and the heart meds so far are keeping symtoms under control.....

Again, the best detector for amy is finding the culprit thru biopsy - also, the light chain test is very helpful - but if the basic markers arent there and there is no severely affected organ or symtoms that really raise some eyebrows - they need to look at the whole PN testing spectrum as others have said...

Hang in there -