Can anyone offer suggestions on getting officially diagnosed and to see a specialist in this area? Maybe share your story? My primary care is clueless about this when I have brought it up to him but agrees, I have all the symptoms. I live near Johns Hopkins and can easily get there but it is impossible to get an appointment with neurology. My symptoms are progressing and am afraid I will loose mobility in both legs soon (already have in one). Time is not on my side. My primary care has just been treating symptoms with pain medicine for years. Never the cause, as it just continues to get worse.