If one has good diagosis to establish a reason for small fiber neuropathy, I would treat the disease diagnosed and see if it the small fiber gets better.

CIDP seems to be a disease entity all on its own...more so than the ethereal small fiber neuropathy that accompanies many diseases, and is also 'idiopathic'. I think years ago CIDPer will probably plopped in MS with disregard to it being a separate disease.

I do not want a sural nerve biopsy if other tests confirm an absence of inflammatory markers that would indicate CIDP. You are correct, sural nerve biopsies are quite damaging. Nerves do not take lightly to manipulation.

20 years ago, diagnostics were more simplistic, if not more inaccurate....now so many factors play in...it is almost overload at times.

25% of all small fiber neuropathy is 'idiopathic', for at least a while.

I believe, that most people do not get the incredibly sophisticated care I have had recently since being seen at the tertiary center, where I have not encountered even a rude clerk.

Muscle biopsy is really last ditch effort to find a cause.....very few people get it, and if any one thought lip biopsy was bad...I don't recommend this. Not to mention compiling a 20 pound genealogy was not effortless either. My symptoms lately cross over into a myopathy category.

EPS is being done, because I have a history of nonsustaining ventricular tachycardia, on top of usual bradycardia. When they first found the nonsustatining VT (2000) they did not know I had SNF. (That clinic had me pegged as fibro) Nonsustaining Vtach, with neuropathy and myopathy, can add up to any number of neuromuscular diseases, basically genetic, or hereditary myopathies, which will in the long run all be declassified, reclassified and renamed, as all include some degree of neurological dysfunction. But if the muscle biopsy come up abnormal it gives even more importance to doing the EPS. I am losing some distal and a bit of proximal muscle strength.

We shall see what emerges from this. I approach it fairly neutrally. What will be, will be.

The neuromusular disease specialist who did my biopsy was very throrough on history, changed the original site of biopsy based on my history, and this is cute...said if 'this is of muscular origin' the biopsy will indicate it''

I told her my neuro will argue with her that the myopathy is really caused by the neuro, not the myo...she laughed and said I was right...and she agreed that it is a point of much discussion and research. This analysis will take 2 to 3 weeks and should yield some info.

Worst case scenario is I needed a pacemaker and they decided not to put one in...right? But then I won't be around to worry about that!

The uncertainty factor which has plagued my case all along. Global anhidrosis is unusal and generally not good....usually an MSA associated phenomenon. I don't have the other MSA problems, yet.

There is no denying the difficulty of autonomic neuropathy. Now I am having functional problems in some muscles, places not typical of SNF...

It will take time to figure this out. Because I get all my care now at the same tertiary clinic, I end up with many great minds chatting about the case now and then....all with acess to the same tests and records, I'm cool with my care. It's fine....they are smarter than I, but don't treat me as if I am too dumb to understand things. I can't ask for more...I am at the end of the internet...

My center is Mayo influenced and the protocols very similar.