I, too, was sent by my neurologist to Johns Hopkins on the slight chance that they might find something. The neuro there was extremely competent and thorough and they did a skin biopsy and a 2 hour EMG/ NCS. Lots of blood tests including some of the Athena genetic tests. Diagnosis was the same, progressive length dependent small and large fiber neuropathy, moderate to severe, with pinched nerves and muscle loss, probable CMT type 2. They said I could pursue more tests, but that there was no treatment beyond pain relief and nothing they could do. Hopkins is wonderful, but even they don't always have an answer. Sometimes there isn't one.