Originally Posted by jimbo533

MAT52, I agree you and others. I was dx with PN about four years ago and I thought it mostly confined to the end of my feet which were tingling and burning. All along I was feeling a tightness in my face and scalp almost like a sunburn. I soon started to feel itching in my right hand. Time went by and the burning in my feet became worse while the other symptoms seemed to level off. I asked my neurologist if he could explain what the cause could be and he said only that it was idiopathic. As I pressed him he said he didn't do tests other than the basic EMG, etc. but he would refer me to the University of Utah Neurology Dept. where they had been doing quite a bit of research on Neuropathy. After 3 visits I quit going. I realize it's a teaching institution, but I was simply a class prop. Each time I went there would be a different student who would come in and do the basic clinical examination followed by the research doctor who would ask them what they found. In every case the answer was the same "progressive idiopathic neuropathy". I was so frustrated I finally said I knew I had progressive idiopathic neuropathy, but the reason for my visits to try to find out why! The students suggested I change my soap or shampoo and they all agreed. Finally I turned to the neurologist who had been the author of so many papers that I had read and he said he didn't know what was causing it, but it "wouldn't kill me". I've never been back.

Over the past two months, my neuropathy that won't kill me has exploded. My legs are fully involved with tingling, burning, and lack of sensation. The same is true of my hands and arms. I continue to have sunburn feelings in my face and scalp, but the symptoms are worse. I'm barely sweating when I run whereas before I'd be dripping. My eyes get real dry. I've always been in excellent health. I've run nearly 30 marathons and countless other races and relays. I've always been very careful with my diet and never went to the doctor's except for injuries. Now I have a serious condition and no one will help. They all say take this pill or that. I know that is the standard treatment, but how is it that were not to give up when the doctors find it so easy to do so.

I try real hard not to be gloomy. I'd much rather be upbeat and optimistic. I retired last April after 32 years as a City Manager. I had great things planned for these years and now this. What's my future look like? Has anyone been down the same road as me with their symptoms. Does this horrible disease ever stop progressing and just level off or is this the beginning of the end. I too am looking for answers.