Update on Autoimmune Encephalitis - Encephalitis Society

Encephalitis Society

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Update on Autoimmune Encephalitis

Gandalf2 profile image
3 Replies

I came across this after a random search of LGI1 - a term I'd not heard of before.

Here is a description: "Mutations of LGI1 have been linked to autosomal dominant lateral temporal lobe epilepsy (ADLTE). Recently auto-antibodies against LGI1 have been described as the basis for an autoimmune encephalitis, associated with specific motor and limbic epileptic seizures."

The Royal College of Physicians has published a paper going into some detail about how this works on the brain and advises on some possible outcomes and treatments. It's all very technical and gives an insight into the level of training and expertise that is needed to diagnose and treat AE.

Here's a link to the paper: rcpjournals.org/content/cli...

Research costs money, budgets are tight and competition for resources is stiff. So don't expect too much progress on what is after all, a very rare condition. Progress in other fields may transfer to AE knowledge. Elon Musk's brain chip may come up with something!

Best Wishes, G2

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Gandalf2 profile image
Gandalf2
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kitnkaboodle profile image
kitnkaboodle

LGI1 is one of the most common forms of AE, mostly affecting older men, whereas NMDAR is another common form, and that mostly affects young women.

Ava Easton from Encephalitis Society (now Encephalitis International) is a co-author on that paper.

HSE_Survivor profile image
HSE_Survivor

Thanks for sharing, Gandolf. Your reading always impresses me. Were you interested in Science before you had encephalitis? It is good to hear that encephalitis is more recognised now and that there is continuing medical research. I know that I am still here as a result of Professor Solomon’s research in 2013, when he trialled the use of steroids to control the spread of HSE in the brain. Research definitely saves lives.

Gandalf2 profile image
Gandalf2 in reply to HSE_Survivor

Hi HSE, thank you for your reply. I was interested in science at school and like to scan the news for reports with a scientific theme - the moon landers (space.com) for instance. The language around Enc. defeats me. I guess you have to build up your understanding bit by bit. But I can have a go and some of it sticks. You sound comfortable with the details of the latest breakthroughs, it's nice to know another enker is keeping up with things. I have a hankering to return to my old self and it's interesting how images and faces that are lost to my conscious mind crop up in my dreams at night. With fatigue as part of enc. I find I can sleep all day and feel better after a rest. My mind is such an interesting territory to explore. The recent news of psylolcybin being helpful for nerve regeneration looks like it may help those with brain injuries but research is costly. I'd be happy to participate if it would help unlock memories or abilities.

Must bail out now, G2

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