Wow, I didn't realize how many people actually read my pointless ramblings here. Everyone wants to know what the doctor said....
Well, nothing actually. As expected she wants to run about a hundred more tests, none of which we can afford. She kept saying "well, if this then we can say this, but if this then we can say this" but wouldn't commit to anything. So that keeps us in the loop of "no diagnosis, no insurance" and since she wants to do more tests that also means "no insurance, no diagnosis".
So until we work out some way to pay for a $5000 MRI and about a thousand bucks worth of blood work and another spinal tap, then we know nothing. And maybe not even then.