[BEGLET]

Body-wide PN is a strange thing....

Mine is beileved to be auto-immune also - sudden onset following some type of respiratory infection (so sounds like CIPD) - as I've gotten some energy from IVIG - although extensive auto-immune testing has not shown as such (everything from all the ANA - SSA - bipsises - LP - MRIs - etc....)....... mine however is not so much painful as both of yours - which sounds awful - the numbness I'm very aware of is in my legs and feet all the time (tingling, etc) - but I dont even realize how involved my abdomen, arms, etc, until I get cut and am bleeding and didnt feel it. Yes, my lips and tongue get numb and thats noticieabe - although it appears the numbess goes thru my guts as I've had to live only on liquids since onset (6 years ago)....
Sural nerve biopsy shows almost a complete loss of large mylinated fibers, disporprtionate loss of small, and then about equal loss of un-mylinated fibers, large and small, and axon degeneration..... also, the NCS/EMGS show complete loss of sensory nerve conduction in all extremities......

Thoughts? - can auto-immune PN affect either predominately large or small fibers?? And, does that make a difference in the type of pain we experience? (from what I read on the site - small fiber causes more pain -large fiber more loss of sensation - loss of balance)

The kind of pain you are describing with the shooting electricla shocks I get around my sural nerve scar - not sure why...... (that nerve is gone right? and has been for five years)

My doctors are revisiting the para-neoplastic aspect next month - surgery recently revealed a progressive cardio-myopathy (again, for no reason) - that is sometimes seen in amyloidosis, and in fact I had a positive biopsy for it a few years ago but they couldnt confirm yea or no (with the progressive heart failure its a strong suspicion again)..... we now have a specialist in So Cal that knows this disease well, and I'm seelnig him and the cardiolgoist he teams with very soon.....

It IS always something- I think part of the trick is both respect your body when it says it needs rest and at the same time - doing the best you can every day