Hi Cindy...you'll find it difficult at best if not impossible to find a doctor who knows of either PPS or Polio depending on where you live. When I first was diagnosed with PPS in 1996 I had gone through many many doctors, many, many tests and many, many wrong diagnosis. I lived in Florida at the time and was in the medical profession.
Don't give up, though it is exhausting I know. Perhaps you should look at some of the forum discussion and check out the "my story" page of some of the individuals members pages at this site. Also go to Facebook...Post Polio Syndrome. When I was first diagnosed with PPS, it still was common not to talk about it. To my knowledge there were no chat areas as there are now. It would have helped me greatly to just beable to talk or write to someone and to know I wasn't in this alone.
I want to discuss with you your back and I want you to carefully decide on surgeries. Please check out Dr. Richard Bruno's website....remarkable man.Take care of yourself. Regards, Susan
P.S. I was told I needed complete reconstruction of my back two months ago by a spine specialist, which included seven levels of my lower back and four of my cervical area much like you. I've been to four specialist and I will be glad to discuss any of this with you.
Welcome Cindy. I hope you find this site as much benefit as I have. I am facing exactly what you are. In fact it seems that most of my spine needs "reconstruction" per my spine specialist. However, I am not ready to tackle this right now. Still researching. Have you had an MRI of your lower spine? Jot me a note if you would like. Regards, Susan