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Autoimmune encephalopathy anyone?

Autoimmune Diseases | Last Active: Feb 9, 2022 | Replies (55)
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@valm

Hello! I was diagnosed with Autoimmune Limbic Encephalitis in Dec 2017. I started with faciobrachial dystonic seizures - my left arm and left face twitched. In 2 days it progressed to other types of seizures because the antibodies were attacking my brain. If you use facebook, please join the International Autoimmune Encephalitis Society page as the people are very helpful. If you don’t you can still get lots of info on their website with the same name. Different types of encephalitis affects different parts of the brain. Also keep in mind that there’s also Hashimotos encephalitits And I’m not sure if that’s the same as what you’ve been diagnosed with.

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Replies to "Hello! I was diagnosed with Autoimmune Limbic Encephalitis in Dec 2017. I started with faciobrachial dystonic..."
tanap1 | @tanap1 | Oct 29, 2019

@valm Thanks! I have requested to join the International Autoimmune Encephalitis Society. I currently follow the Autoimmune Encephalitis Alliance, Understanding Hashimoto's Encephalopathy, and HESA which are also on facebook. Although I haven't been medically "coded" with a diagnosis of Hashimoto's Encephalitis, I am currently being treated as if that is what I have. I have no other autoimmune markers except for very high TPO and TGab levels. I responded very well to high dose IV steroids so hopefully I am on the right track! The steroid treatments have "worn off." I hope I find good answers with the neuro-immunologist. What types of Drs do you see for your care?

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