Reply To: Undiagnosed – unusual deterioration course

I also live in Florida. Mine is different than yours, but what I have learned is that you really, really need to somehow go to a place where they have experience with autoimmune, neurological disorders. University of Miami, cleveland Clinic Hospital ( where I went) and University of Florida in Gainesville, are where you have to go.

MF, CIDP, GBS are all pretty rare, so even good doctors, who are not used to treating these things, will be more hit and miss. You may well end up having to go to one of those places where they deal with it regularly.

I had seen several doctors and was discharged from one hospital with no diagnosis, before I was lucky enough to get in with the experts. Literally when I hobbled in the door of the exam room, the docs first words to me were, Just by seeing the way you walk, and your eyes , you have classic Miller Fischer, but we will need to run some tests to confirm. And he was absolutely right! That after doctors and MRIs and other doctors were mystified.

You will find, when you get the right doctor, and know what it is, it is a HUGE relief.