Yes, I had much the same experience. particularly with the doctors.
My GBS developed much faster though and I am now close to two years
in. It started with Epstein Barr and in case you didn’t know that’s also
very rare except in teenagers. The rates of occurrence I’ve found say
that the most likely age group is from 15 to 19 and that the rate for
the entire population over 35 is 2 per 100,000 per year. In other words,
they have no statistics as 2 is the lowest number they can put there
without asserting that it is impossible. I suggest that some of the
symptoms you describe could be from the EB.