Steve R: LGi1 Autoimmune Encephalitis Lived Experience

Steve shared his story at the Encephalitis International event, My Brain: My Story, in October 2022.
Steve was diagnosed with LGI1 autoimmune encephalitis in 2018 following many visits to his GP, local hospitals and specialists for blood tests, psych evaluations, scans and the like.
Steve presented with numerous symptoms such as sleeplessness, hyperactivity, odd behaviours and facial ticks, unexplained headaches and more. He was finally admitted to Royal Surrey Hospital in mid-October and went on to spend the next five months in three different units receiving a number of different treatments. For a number of those months he was placed under a Deprivation of Liberties order (DOLS) to ensure his safety.
Steve finally returned home in March of 2019. Since then, he has become an author of six books, which he has self-published on Amazon. He still struggles daily with his emotional world and spent much of 2021 undergoing a battery of tests for a possible relapse.
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[@OneRedKansan55]

Thank you for posting your story.

[@retfox8662]

This LGI1 encephalitis is relatively rare (according to my neurologist). There are probably fewer than 10 people known to have it in Switzerland. And I feel very lonely because of it. That makes your publication all the more valuable. I immediately recognize myself in some of your problems (emotionality, memory, tremors, etc.). I was never tearful and I hated myself for crying in the middle of the family, seemingly over nothing. I start to realize...
Thank you so much for this video!

[@encephalitisinternational]

Hi, if we can support you in any way please do get in touch via our website.

[@jaimz33]

I can see its still effecting you. But it gets better as time passes. My memory was terrible after I came out of hospital. I'd be driving toward a junction in an area I've lived in for 35 years and I'd forget which way to go. I made a rule that everytime it happened I'd go left if allowed. That lasted a year or more. I'm 3 years out now and its improved a lot. Good luck mate. Jaimz

[@parvinabegum8886]

Thank you Steve. You have done a great commitment by sharing your experiences to us which we'll benefit to our journey of similar conditions.

[@sharonH738]

Thankyou Steve . This really reached home . Grateful for your sharing this it’s an insight into my young sons thoughts he struggles to share x

[@johnatknable]

Very open and honest video. Wishing you well on your journey Steve, I’m just starting mine.

[@duncanfromek4081]

Thank you Steve for sharing your story.

[@encephalitisinternational]

Thanks for listening, Duncan