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Movement disorder

Brain & Nervous System | Last Active: Mar 1, 2022 | Replies (14)

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@remybelle

For those of you who have been admitted to Mayo from other states, like CA for example, how was your experience?
The last thing I want to happen is the neurologist relies on my old neuros notes. I am hoping that they would do a complete investigation on their own to diagnose me and treat me.
I was told I have orofacial dsykinesia / oromandibular dystonia caused by lupus. But all 6 meds and 4 botox have failed to control them. Meanwhile recent blood tests shows that lupus is well controlled.
I am also applying for financial assistance since I cannot afford the Mayo services and they do not accept my insurance.

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Replies to "For those of you who have been admitted to Mayo from other states, like CA for..."

@remybelle I was accepted at Mayo for spine surgery. The only thing they asked for was my imaging. I did also send my neurology evaluations, and it didn't make a difference. Mayo does their own neurology testing a bit different, and that very much depends on the skill of the doctor and how accurately they locate the nerves. Since they base important medical decisions on tests, they need to know the tests are accurate and relevant for the case. At Mayo if a patient is accepted, they are very thorough and will do their own testing to confirm a prior diagnosis. Mayo has to answer if they can accept patients without insurance, and there must be a limit on care that taxes their resources. Having insurance does help patients get accepted. Any institution has to be able to cover operating costs, and Mayo also funds research and expanding into new treatment facilities and new locations. My experience at Mayo was excellent and I was out of state, and Mayo was in my insurance network.

Have you applied to some of the well respected medical institutions in California that may be in your insurance network?

Thanks for your response, Jennifer. I have Medi-Cal that is only accepted in my County. I’m currently with Stanford but the new neuro just relied on my UCSF neuro notes. Apparently all genetic tests were done at UCSF and no more can be done.

I have not given up hope that’s why I turned to Mayo.