Originally Posted by cat1234

It sounds like you need to continue your search for a new doctor. I have gone through three before finding one who really understands and spends the time to help me. And it was actually my gynecologist who recommended her! I too traveled to Hopkins and had no clear cut diagnosis after countless tests and both a skin and lip biopsy.

The first neurologist told me my EMG/conduction studies showed definite small fiber neuropathy. The second looked at her test results and disagreed but said my description indicates neuropathy-that the testing does not necessarily show the damage until it is beyond repair (which may be good news for you). Hopkins said their EMG/nerve conduction shows nothing but the skin biopsy showed innervation of sweat glands leading to small fiber neuropathy symptomology. And also that my bloodwork indicates Sjogrens but my lip biopsy came back negative. Since the treatment in either case is to manage the symptoms, at this point my action plan is to manage the pain and fatigue and try to pinpoint and avoid triggers. The doctor I have now, who I LOVE, says many patients have "clinical" neuropathy that does not show up on any testing. So there you go....this could be your case as well.

It is SO frustrating and I feel your pain (literally). Hope you find this forum as useful and supportive as I do