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@cjb1973

You can always go for a second opinion and if you are on Medicare. It is really worth your time and may help you to know to keep you from worrying and guide you. You do not have to see an MD at your clinic, but check with Medicare and if you have secondary insurance. Medicare is a very helpful resource. Hope the best for you and that you find your answer. Carla

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Replies to "You can always go for a second opinion and if you are on Medicare. It is..."

@oleander55 you’re really in a tough position—you’ve got a questionable disease, but you can’t find anyone who knows about treating it. The Mayo Clinic has several “network partner” hospitals that you can call or even make an appointment if it’s not too far away.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
You can also find a comprehensive hospital near you or a university teaching hospital. That’s what I had to do when no one in my city had ever heard of the autoimmune disease I had and desperately needed help for. They were very helpful!
What I might suggest is that you also google The National Association of Neurology Nurses. They would be able to help you in finding a doctor. I wish you the best of luck!