Your story sounds eerily similar, Jim.

One of my several theories on what has caused my neuropathy is that it's something spinal that is not yet understood and/or not yet detectable through MRIs.

Like you, I'm usually pretty symptom-free when I wake up, although I do have this odd "buzzing" going on. As soon as I start moving, though, it goes away (and my back usually hurts when I first wake up). As the day progresses, and especially in the evening, the burning will start setting in. I usually start feeling some relief when I go to bed, although not always. Early on, I was especially had a hard time sleeping.

Twice now in my life I've had two instances of multi-week increased intercranial pressure. That's my diagnosis BTW. Doctors never put a name to it. I felt like my brains were trying to explode out of my head. It wasn't painful, just this horrible pressure like sensation. I also experienced brain fog with it. When I first experienced it back in the 80s, the neuro believed it was related to cervical problems I had which have gotten progressively worse. I had another episode of it in August of 2013, and my neuropathy set in two months later. I also hurt my neck in October. I've had MRIs from top to bottom showing a lot of problems, but nothing that would cause neuropathy.

So I think it's a possibility this could all be spinal, and it's just not understood yet.

But ask me tomorrow, and I'll tell you something different.

Janie, I also had my symptoms kick off after a minor whiplash type injury. Have had all MRIs showing nothing since then just bulging discs. But I always wondered about the connection.

Just wanted to update my condition. I had a Thorasic spine MRI which was normal. I just had my B6 level re-checked and it came back at 9.2 ng/mL which is in the normal range. It was at 127.

Went to the podiatrist and he gave me Methylprednisolone to take for 6 days and it didn't really do anything. I also had a Doppler test on my legs to test the blood flow to my feet which came back normal.

Last weekend my symptoms seemed to lighten to the point where I finally thought I was getting better. I actually felt almost normal again for 4 days. Then by Wednesday the symptoms came back seemingly worse than before.

And now today after all of the tests and medicine and vitamins, it has now been 6 months and I feel the same as when it started. My Neurologist said we could do a lumber puncture to test spinal fluid but I am reluctant to do that yet. I kind of feel like I'm at a dead end now with my only hope is that the vitamins will slowly start to heal the nerves. But its hard to think that they are healing if I can't find what is causing it in the first place.

Jim - just wanted to let you know that my husband too is the opposite to most people with PN; like you his symptoms improve when he goes to bed. In fact when he is really bad he will lay down during the day just to get some relief.

Once he has been up for maybe an hour the tingling/burning starts in his hands, progresses to his feet and by late afternoon he is just a mess some days.

I have often wondered why, but have never been able to get a definitive answer.

He is currently on a Fentanyl patch, after the Gabapentin stopped working. They have now added Lyrica to the "cocktail" starting last week and things do seem to be slowly improving.

If you ever find the answer please post!

Thanks, Linda