Hi Char,
I know this is an agonizing process. I only had to go through it for five months, but it was tough! I felt like I had a dark cloud hanging over me, like I needed to be treated for what was going on, but my first neuro didn't know how to diagnose with the modern methods.
I hope you can get a definitive answer so that you can either start treatment if that's your plan, or at least rest knowing what it is so you can tackle it and deal with it in your own ways.