j.,
You're right-on with the testing.
It always seemed to me to be a no-brainer to repeat tests
every so often to see if there are any changes in the results.
But you have to pull teeth to get the neuros to do that, once they have a Dx.
Then they're not interested in doing it any more.
I have my PCP repeat tests my neuro did, every year or so, and have her
send the results to my neuro.
She works with me, on a regular basis- and tries to see if there
is any correlation or pattern to the results.
Usually there aren't any changes, so at least I know that
things aren't getting any worse.