Welcome @ratmum, I'm happy to see that you have already connected with @langloism and @leslie04. Hopefully other members with some experience with sensory ganglionopathy will join the discussion.

You mentioned that you are also a science geek who loves to research the scant medical literature on the rare condition. One of my favorite search tools for finding medical research information is Google Scholar - https://scholar.google.com/. Have you used Google Scholar before?