It's really frustrating when you can't get a definitive diagnosis.
But, it seems neurological disorders in general are very difficult to diagnose. Often, there are no lab tests, MRI scans, or surgeries that can tell the doctors exactly why your seemingly intact nerves are not functioning properly. Even the symptoms (such as pain) are difficult to interpret since they can't be physically measured and rely on the patients description. So, all the doctors are left with is making "educated guesses" based on your history and symptoms.

Hopefully there will be breakthroughs in this area soon. Unfortunately, it will probably be too late for most of us to benefit. But, at least our children might have access to better diagnostics and treatments in the future.

When I first had strange neuro problems 30 years ago that were defying diagnosis, my neurologist at the time apologized to me. His near-exact words were, "I'm sorry I can't give you a definitive answer on this. Neurology is where modern medicine was about 200 years ago. We have a long way to go."

Apparently another 170 years, and we'll stand a chance.