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At the Mayo Clinic, I had every test the doctors thought might cause the problems I was experiencing. Many of these were repeats of previous testing, but there were some new ones.

One test placed a small conductive element on the back of my hand and I told them what temperature I felt and to what degree. Of course I didn’t know what I was supposed to be feeling, and that was the point. That test showed significant deficits in my ability to sense temperature.

The neurologist exam was fascinating. For part of it, the neurologist used a piece of cotton to touch different areas of my limbs, while asking me to describe where it was. If he touched my toes I could sort of feel it, but kept feeling it after he lifted the cotton. With my eyes closed I had no idea where the cotton was touching or when it was lifted – at least not on my lower limbs.  About knee/elbow height I could predict sensation normally.

After briefly going over the negative results of all the other tests, the neurologist said, “I know exactly what you have, and it does not surprise me that you have not been diagnosed until now. Most doctors don’t know how to test for it. It’s called ‘small fiber neuropathy.’”

FINALLY A DIAGNOSIS!