← Return to Daughter with Newly Diagnosed Generalized Absence Seizures

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@valm

I would have your neuro check for autoimmune encephalitis. They sent my spinal fluid to Mayo (highly recommended) to test for antibodies. I was diagnosed after having Facial brachial distonic seizures. My neuro never heard of AE until me. I video’d my seizures and he spent the night researching and the next day said “I think I know what you have”. Took spinal fluid, sent it to Mayo who confirmed. My body was producing antibodies that were attacking my brain thinking it was an “enemy” when it normally would attack a virus. AE is very often misdiagnosed as it is rare. Please have your Dr check for this. The sooner the diagnosis and treatment, better chances of full recovery with minimum brain damage. In the hospital they tried steroids, nothing worked.. so they tried IVIG and it stopped the seizures, though temporary. There’s an International Autoimmune Encephalitis Society group on facebook and they also have a website. Their website is loaded with information. Please please have your Dr check for this.

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Replies to "I would have your neuro check for autoimmune encephalitis. They sent my spinal fluid to Mayo..."

Hi, @valm - just wanted to encourage you, when you have a chance, to consider posting about your experiences with autoimmune encephalitis in one of these Connect discussions on that topic:

- https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis

- https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis

I think the others in those discussions would be interested in hearing about your experiences.

Are you still seizure free? How is your health currently?