Originally Posted by en bloc

I have only had a skin biopsy at Hopkins (twice). Both times there is no density numbers at all (just within normal limits), yet description of fiber condition is very detailed and shows significant damage

I was frankly pretty disappointed that the institution that developed the test (I believe it was Hopkins) doesn't even provide the density numbers in their results...which would allow progression to be noted, even if initial tests in normal range (it could be informative to see if borderline or heading in the direction of abnormal).

However, Hopkins did do a fancy MRI/MRN to look at the dorsal root ganglia and found bilateral damage & enlargement/swelling. So this also led to the explanation of the neuropathy diagnosis. I do plan to get another skin biopsy this summer (will be 6 years from the last one) to see what has changed.

As for the Sjogren's, I have this even though my blood work has always been negative. My biopsy was positive, but only by means of so much damage there was nothing but scar tissue left. My doctors (several) believe my negative blood work is due to my deficient immune system...that not enough 'antibody markers appear' because there isn't enough antibodies to begin with.

A diagnosis is only good if it means a change or different possibilities in treatment options. I thought you were receiving IVIG. If you still are, you are receiving the best option available for autoimmune based neuropathy. If it helps, then I wouldn't worry about pinpointing the neuropathy. If it does not help, then yes I would understand you wanting more info to see if you might benefit from other options...for other types of neuropathy.