@claudia72 ironically, I live in Phoenix and have access to Barrows, and Mayo. I also have a neurologist…My situation is the result of a very rare autoimmune disease. It damaged my nerves so I have Polyneuropathy.
I also experience pain on my head, and it is from occipital neuralgia (the nerves under the scalp are inflamed).
The brain MRIs I have had show medium atrophy in my cerebellum so they say that I have early dementia.
That atrophy has caused a rare condition called Ataxia.
Acquired Ataxia results in a loss of balance, coordination, and other “fun” things…I must use a walker now.

I wanted an appointment with Mayo to discuss treatment options and compare them with what I have been receiving.

I used to manage a nursing home for people with Huntington's Disease, which is a genetic disorder that affects about 50% of offspring. We also had a very well attended outpatient/allied health day clinic. At this time, no one had discovered the actual gene, so there was no living diagnosis, nor was there treatment. In trying to get everyone's DNA, so many families would say "But there's no cure, so why go through all this?" My answer was always that "One day there will be, and your family could be the one that springs open the final clue."
Well, it happened. The gene was found, and the cure is being developed.
SO, my comment (long winded as it may be) is NEVER to stop looking for answers. There may not be one now, but you could be the key that opens the final door. Put the anxiety aside and look at it as a search for mankind, for all the people like us that have the same thing. And stay positive.