Tom, I'm so sorry I missed your post! I do wish you might reconsider the hospitalization for tests.
I looked all over the internet as well, and Gougert Syndrome keeps coming up with links that have Gougert associated with a few other names. I wonder if Lara is correct about the Sjogrens because I noticed on The Sjogren's Syndrome Foundation web site that the name Gougert does show up.
Apparently there are treatments but depend on the individual. I honestly think more testing (since you're already closed in on a 'semi-final' verdict) couldn't hurt and might help. Well...yes, spinal taps aren't any fun.
I'm just very grateful that you keep us updated. We worry you know.