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Movement disorder
Newbie here. I was diagnosed with neuropsychiatric lupus with oromandibular dystonia in January 2021. In 2016, the Neurologist I was seeing at the time said I had TIC, but the new Nuero said no.
Doc rheuma said while I do not show other signs of lupus, have positive antinuclear antibodies, positive double-stranded DNA,, positive SSA antibody. also have elevated antibodies that can be seen in lupus affecting the brain. Also have a neurologic disorder (Choreiform movements of tongue, cheek biting throughout the day, tongue biting, chews constantly on cotton/gum. Frequent blinking, frequent sniffing, ending sentences with “hmm”.)
Neurology noted possible choreiform movements of the tongue and toes, slight bradykinesia, lingual dysarthria.
Management of my symptoms has proved challenging for my neurologist as 7 medications and 4 Botox injections have failed to control them.
My lupus is well controlled by immunosuppressants as blood tests show normal now. The puzzle is why my symptoms are not improving. The new neurologist I am seeing does not have any other medications to give. She also said if it’s not the lupus it must be genetic s. She has suggested DBS.
I’m not giving up until I find out the underlying cause of my condition.
I’m from California, unemployed and have Medi-Cal.
I have sought a second opinion from Cleveland Clinic with no help.
I am hoping to get into Mayo but can’t afford it
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I also wanted to add that MRI of the brain showed damaged basal ganglia which they said was caused by lupus
Remy, I admire your resolve to not give up and to continue to search for the underlying cause. It sounds like your neurologist is also working hard with you.
If you choose to pursue consulting with Mayo Clinic experts, you may wish to look into financial assistance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
To get Mayo Clinic expertise closer to home, consider partner health systems in California with the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/about
The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise.
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1 ReactionThanks Colleen. I have been advised by Mayo's patient coordinator to apply for financial assistance as well. I have submitted my application via email.
I will definitely check out the link you have provided for Mayo Clinic Care Network
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1 ReactionHi Colleen,
The email that was given to me came back undeliverable. Any chance that you have an email address for them?
I wanted to send electronically so it would be processed faster.
Here is the web page and contact information for Finanical Assistance Services https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
It includes an electronic PDF form https://mcforms.mayo.edu/mc4200-mc4299/mc4244-15.pdf
Remy, please call Financial Assistance at 844-217-9591 (toll free) to find out how to transfer your information safely and securely.
I tried again...It says that domain could not be found. I guess I'll just have to mail it.
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.
@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?
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1 ReactionThanks 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.
I am also hoping that Mayo would come up with their own diagnosis