[QUOTE=LIT LOVE;1153276]Regarding if you should try to connect symptoms to meds--not when you're guessing.

Let's say you start taking Rx A. You notice it's making you drowsy and discuss it with your doc. He agrees the med is causing it, but the benefits outweigh the side effects. Fine--mention the drowsiness and explain it's caused by the Rx.

When were you diagnosed with PN?

***** At least 2 years ago. Recently, like a month ago - it was proven via a skin biospy. So, we now have solid numbers/data to prove it (rather than just clinical impressions).

Small Fiber PN. Three test spots were taken. In two out of the three spots, I was outside the bounds of the normal range. Therefore, the KU doc concluded her DX of small fiber PN. Small fiber PN CANNOT be detected via NCT/EMG. And, its most prevalent symptom is PAIN.

Finally, a general neurologist often misses PN. They are usually looking for 'big stuff'. MS, ALS etc.

To get my DX requires a subspecialty of neurology known as skeletal/muscular. KU is one of EIGHT accredited PN centers in the country. I was told my the President (Gene Richardson) of one of the large, national PN organizations that I 'must get to KU to even have a shot of them DX'ing my condition correctly."

Until I went to KU, over the last two years it was the usual case for a PN patient . . . bounced from Dr to Dr as they throw up their hands in bewilderment. At least 3-4 docs DX'd as PN - but did not know how to treat it. Some of the treatments made it worse . . . they would 'surge their shoulders . . . and say 'I'm sorry. There is nothing else I can do for you."

My brother has been a DR for 30 years. He is a good one. He had no idea of the distinction between SMALL fiber PN and LARGE fiber PN. Neither did any of the other docs I was seeing until I got to KU.

Thank you.