Thank you so much for this. I’ve been struggling with a downbeat nystagmus for about two years. We’ve done blood work, checked for tumors and I had a lumbar puncture. I have high GAD65 antibodies but neither Cortisone nor Immunglobuline helped. I only had terrible side effects. I’ve been to doctors in vienna (where I’m from) and Berlin (where I live rn) but they all seem quite lost. Have you ever heard of a autoimmun encephalitis and nystagmus???

@encephalitisinternational

2 жыл бұрын

Thank you for watching and for your comment, LisasShortfilm. We are sorry to hear of your nystagmus and high GAD65 antibodies. Our support team are here for you - please reach out to support@encephalitis.info, or call us on +44(0)1653699599.

What do I do if my symptoms match perfectly but all of my tests and normal? It's taken almost a year just to do the blood tests, MRI, and Lumbar Puncture. I'm still waiting on a 4 day EEG and I'm asking my doctors to do a Tumor/Cancer screening.

@encephalitisinternational

3 жыл бұрын

Our support team are here to help - you can reach us at support@encephalitis.info, or +44(0)1653699599. You are not alone - we are here for you.

1:30

Hello thank you, very intersting lecture on AE from Dr. Bo Sun. I would like to ask you wich are the major differnces we have to consider thinking between a patient that could have AE or the viral ones especially the Herpetic ones? WIch are the differences between the two type of encephaitis?

@encephalitisinternational

4 жыл бұрын

Thank you for your comment, chispioo. This video gives a brief overview of symptoms of encephalitis, with some differences between autoimmune and infectious types: kzread.info/dash/bejne/p59mxLZ_k9rZlqw.html. If you would like to learn about these two categories of encephalitis in more detail, you can read/watch more about infectious types here: www.encephalitis.info/Pages/Category/infectious-encephalitis, and autoimmune types here: www.encephalitis.info/Pages/Category/autoimmune-encephalitis

My mother was diagnosed with AUTOIMMUN ENCEPHALITIS. .LG1 PLEASE HELP US TO GET READ FROM IT..PLEASE

@encephalitisinternational

Жыл бұрын

You are not alone, sumanghosh9329, we are here for you and your family. Please don't hesitate to reach out to our support team for advice, information, signposting or a listening ear. You can reach us at support@encephalitis.info or +44(0)1653699599

I have this. It sucks.

@heatherwanamaker8000

2 жыл бұрын

I have the Gad65 anti-bodies. It is no fun.

@encephalitisinternational

2 жыл бұрын

You are not alone, Heather - we are here for you. If ever you need any support, please don't hesitate to reach out to us at support@encephalitis.info