[heb1212]

My "neuropathy" symptoms started nearly two years ago a couple months after a difficult viral infection (parvo virus b19) coupled and/or coinciding possibly with a flu shot. I recently received the results of a small fiber nerve skin biopsy indicating that my nerve fiber density is well within normal limits; no inflammatory infiltrate; some small and medium sized axonal swellings of unclear clinical significance. The initial neuropathy onset was subacute and was (and continues to be) body-wide, to include my head, face and inside my entire mouth, throat and inner ears. This is severe and now even more confusing because the skin biopsy I so lobbied for is normal??? I've done loads of research and reading on this site and article after article elsewhere. It seems likely that my neuropathy (my neurONopathy?) is immune-mediated or a direct injury from the virus, but wouldn't there be at least some evidence of this via the biopsy? How else can a ganglionopathy manifest itself diagnostically? And would a negative skin biopsy (excepting some axonal swellings) seem to indicate something else could be going on? I am having such a difficult time understanding and accepting the "unseen" that is so very painful, real and unrelenting.
Many, many thanks to the sympathetic knowledge so many of you bring to this site!

[glenntaj]

--there are some problems with interpretation of skin biopsy results (I've written extensively about these here before), in that unless the intraepidermal fiber density is below the fifth percentile or above the 95th most clinicians will say it is normal (according to the McArthur protocols--the original norming studies at Johns Hopkins).

But, that doesn't mean one can't have a neuropathic process going on. I used the example of someone who shows up at the 17th percentile. That would be considered normal, but suppose before their syndrome began they would have shown up at the 40th percentile, or something like that. There would be no way to know, as people, except those involved in research studies, don't get skin biopsies when they are feeling WELL.

On the other hand, those "axonal swellings" may need to be investigated further; some normals can have occasional swellings in a sample but if they are widespread it increases the likelihood that there is something going on. And, the good thing about skin biopsies is that they are repeatable--samples can be taken down the road from the same areas and compared to see if there are increases/decreases in nerve fiber density and if the condition of the fibers changes/gets worse/gets better.