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Elsberg Syndrome: anyone diagnosed or heard of it?
After months of tests, MRI's, blood work, CSF tap, PCP visits neurologist appointments, Rheumatologist appointments, being told to go to a tertiary institution - which I am still planning to do to get treatment - I had to research and diagnose it myself. I will not visit another physician who has not heard of or treated anyone for this syndrome personally. Hoping that somewhere in California I'm able to find one.
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@seeker4answers, Good for you for doing your own research and advocating for yourself. I'm wondering if you can find a specialist in Cauda Equina Syndrome (CES) since they may have to be familiar with Elsberg Syndrome.
"Emergency physicians must consider Elsberg syndrome in their workup of CES because the condition is treatable, and discharge of these patients without full workup and treatment with acyclovir can result in potentially devastating permanent neurologic deficits."
--- Cauda Equina or Just HSV? Don’t Forget About Elsberg Syndrome: https://www.emra.org/emresident/article/elsberg-syndrome.
Have you tried a teaching hospital or major health facility in California?