Thanks for the well wishes Nicki, Bev and Karlin. I do feel some relief now that she has a diagnosis, although you're correct, it's not one anyone ever wants to hear.
I am going to be putting together a packet of information for my vet and all the vets in her office and our dermatologist.
I can't urge anyone enough that if your dog is scratching their ears, neck, chin, shoulders it would probably be a wise idea to get them MRI'd. By the time some of the symptoms get extreme, the disease is advanced. With Lucy the disease progressed so slowly she was able to tolerate higher levels of pain more and more. Although her scratching was definitely getting worse.
I was so lucky to read on Karlin's SM website about a study going on in Long Island conducted by Dr. Marino. Fortunately it's close to us and that is where we decided to take Lucy. They offer many helpful tests for a very reasonable price and it is a first class facility with much experience.