Has anyone had any experience with Post Encephalitic Syndrome?

[Magdalene22]

Hello, my mum has just had this diagnosis. However, nearly all the information online seems to only mention Postencephalitic Parkinsonism. Therefore, if anyone can help with information it would be greatly appreciated.

[Ocean96]

Hi Magdalene22,

Apologies I haven't heard of that before. I would suggest contacting the Encephalitis Society however as they have so much information and even if they don't they will always research and get back to you! encephalitis.info/support

[Magdalene22 in reply to Ocean96]

Hello Ocean96, I think that sounds like a good idea. It is certainly something we could try. Thank you.

[alpappy]

No I have not had this Just loss of taste Memory loss and odd very fuzzy days But no this seems rare indeed alan

[Magdalene22 in reply to alpappy]

Thank you for your reply. I think that's the problem, everything around Encephalitis is rare. Unfortunately, this seems particularly so which means information is difficult to find. We will definitely have to discuss it further with the Neurologist.

[KnitOneCrochet]

Perhaps it's a term derived to name the long term side effects post E. I know from hearing other people's stories that it differs from person to person.

[Magdalene22 in reply to KnitOneCrochet]

Thank you for replying. That is certainly a possibility. We will need to discuss it with the Neurologist to obtain more information.

[Paula-38 in reply to KnitOneCrochet]

I agree with KnitOneCrotchet because I had also seen that online when I first joined the Encephalitis Society and a gentleman there told me it's a name given to the long term after effects and that everyone's after effects are different so literally anything post Encephalitis really.

[Magdalene22 in reply to Paula-38]

Thank you Paula-38. It's a bit disappointing that it seems to be such a general term. Although I have found through research that, as you say, there seems to be such a wide variation in symptoms post Encephalitis.

[Tuesando]

Are you referring to motor function disturbance or epilepsy?

[Magdalene22]

Thank you for replying. Actually neither, my mum's symptoms are memory loss/problems and psychological issues, such as delusions.