Large fiber should have showed up in EMG though......

--if the damage was extensive enough at the time to be caught; EMG and nerve conduction studies tend to be fairly gross measures of large fiber function and if abnormalities show up that means damage at tha tpoint is pretty extensive.

There are certainly many cases in which there are symptoms, particularly sensory, but the testing shows up "normal" or subclinical. And yes, sometimes the equivocation is removed if testing is repeated some time later.

Similar situations happen with small-fiber neuropathies; sometimes the intraepdermal nerve fiber densitites are low, but not below the 5% cutoff, in the initial stages of a neuropathic process, but if the test is repeated later, that percentile cutoff has been passed. (Of course, it's almost impossible to know what density level one started at, as the test is almost never performed on someone pre-symptoms.)

And sometimes one gets good news--my first skin biopsy showed reductin in nerve fiber density down to the second percentile, but the next one done 18 months later got me up to the 9th to 11th percentiles (at ankle andthigh, respectively). Still low--I doubt I started that low, these many years ago--but evidence of some re-enervation, and it has been correlated with some recovery an reduction of symptoms (though they certainly aren't all gone, and I am very prone to compressive effects--probably due to the re-enervation taking place along pathways different than the original ones, where it's easier for me to pressure them).

If you don't mind my asking.....was your case labeled idiopathic?

Since nothing else was ever found from other testing, except an equivocal result on Cornell-Weill's own ganglioside agglutinin test, (which is a gross measure of autoantibody activity), my official diagnosis is idiopathic, though molecular mimicry autoimmune mechansims are suspected.

I was tested for a full gamut of known antibodies, but had no detectable levels of any--the ganglioside agglutinin test result implies that something was going on, though, quite possibly involving antibodies unique to me and my small fiber nerves.