First off sorry for your issues. I know how frustrating medical issues can be.
I second trying IU Health, all of my doctors are now there and I’m pleased with their knowledge and professionalism.
Good Luck and hope you get the help you need.
First of all I'm praying. Secondly, I'm very early on in my research, but I've been looking into parasites as a cause for a lot of ailments. We all have them, it is just what they cause is different. I know MS is caused by parasites and Dystonia has some similar results. If modern medicine fails you, maybe try to find a holostic doctor that could get him on a parasitic cleanse. It is more than just taking medicine and it must be done in steps to make sure it is done safely. I have not done it myself, but it is on my short list of things to do.