Originally Posted by Hermes

Hi everyone. I'm new here. My symptoms started about 2 years ago with numbness in my thighs when I stood still for any length of time. My doctor sent me to a rheumatologist who couldn't find any problems and told me it would just go away. Around a year ago the pain started. I went back to my doctor and he sent me to a neurologist. She ordered an MRI of my spine, which was normal, and then of my brain also normal. I then had an Electromyography (EMG) and nerve conduction study (NCS). These also were normal. I was told that all we could do was try and treat symptoms. I was on Neurotin, which didn't work. Pain, sensitivity and numbness got worse and spread into my feet. I went to Johns Hopkins University Neurology in Baltimore, MD and they ran another EMG/NCS and an MRI of my neck - all normal. The doctor sent some recommendations for 3 meds (Neurotin, Cymbalta, Lyrica) to try to my neurologist here in VA. Cymbalta worked fairly well at first later she had to added Lyrica. Hopkins ordered a battery of blood tests, 13 vials of blood - all came back normal. Hopkins then ordered a skin biopsy to test for small fiber neuropathy - normal also.

My DX is Polyneuropathy - Idopathic. Pain, numbness, sensitivity continues to get worse, especially at night. It is also spreading up my lower back. My neurologist referred me to the John Hopkins Blaustein Pain Treatment Center after saying that she didn't know what to do. I have an appointment, first available, in 5 weeks for an initial consultation. I hope I can still function by then.

I do feel very fortunate to be this close to Hopkins as it is one of the top rated medical centers in the country. However, it concerns me even the top hospital in the country doesn't know what is causing this or how to treat it. My fear is that if they can't treat the cause then the symptoms will just keep getting worse.

Anyway I've been reading the posts here and thought I'd share and see if anyone had any thoughts on my condition.