Elsberg Syndrome: anyone diagnosed or heard of it?

Posted by seeker4answers @seeker4answers, Sep 3, 2023

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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John, Volunteer Mentor | @johnbishop | Sep 3, 2023

@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?

sunny17501 | @sunny17501 | Apr 12 7:00pm

UCLA Infectious Disease Neurology should know about Elsberg. Trying to get in there now.

John, Volunteer Mentor | @johnbishop | Apr 13 8:24am

In reply to @sunny17501 "UCLA Infectious Disease Neurology should know about Elsberg. Trying to get in there now." + (show)

Hello @sunny17501, Welcome to Connect. @seeker4answers also has mentioned Elsberg in other discussions and might have some information to share. Have you done any research on the condition?

bajjerfan | @bajjerfan | Apr 13 8:35am

How many MDs have ever heard of Nutcracker Syndrome? Took a friend's wife over a year to get it diagnosed.

sunny17501 | @sunny17501 | Apr 14 9:46am

In reply to @johnbishop "Hello @sunny17501, Welcome to Connect. @seeker4answers also has mentioned Elsberg in other discussions and might have..." + (show)

@johnbishop thank you I will find that post

sunny17501 | @sunny17501 | Apr 14 9:52am

Your post is from 2023 so I hope you have found answers and you are healthy. In the last month I’ve lived this nightmare. AI helped me diagnose. No doctor has heard of it. I’m on Valtrex 1000 mg/day for 2 weeks and it’s resolving. I educated my PCP and fortunately she listened. Working on referral to UCLA Infectious Disease Neurologist. That seems to be the key specialty. It’s been frustrating and frightening to say the least.

sunny17501 | @sunny17501 | 6 days ago

In reply to @johnbishop "Hello @sunny17501, Welcome to Connect. @seeker4answers also has mentioned Elsberg in other discussions and might have..." + (show)

@johnbishop yes I’ve done a lot of online research and it’s a lifesaver. I essentially diagnosed ant have been treating myself. Finally yesterday a call from UCLA for an appointment!!