Have you had an MRI of your brain and brain stem? That is what finally led the drs. to the correct diagnosis in my case. Read up on Chiari malformations and see if those symptoms fit, there are a ton of different symptoms, and see how those fit with you. I would go into the drs and tell him you have done some reading, ask if you could have an MRI of your brain to rule out a chiari malformation. They are not as rare as they would have you believe. Good luck and feel free to ask me anymore questions. I can get as specific as you need.