So, you are atypical like me, huh? I really thought I was the only one with the demyelination diagnosis. Sorry you have to be here, but glad I'm not the only one! My neuro always says it is MS, just not the normal kind so none of the drugs will work. I am on symptom meds and get IV steroids when I need them.

I have done the dizziness testing at the ENT twice now. Both times they said it proved that the problem was from my brain and not my ears. It's kind of a rule out thing. They are just making sure it isn't being caused by something in your vestibular system.

It does get frustrating. Sometimes I really want an answer, but I don't have the energy to go through all the tests again. After five years, I have given up on the "real dx" and figure I'm just stuck where I am.

I hope you get some answers from your PET scan. That is one test I have never had and I thought I had them all!!

Your daughter's wedding sounds like it was fabulous. I've always wanted to go to the Bahamas.

I'm so glad you started this thread. Keep posting, Deb. Just jump in wherever you want.