Did I have Encephalitis?

[cheddah]

I was in hospital for 3 months last year with a brain infection they described as "an encephalitic illness". I'm still getting letters from the hospital saying "it wasn't this, that or the other thing we've tested for". I'm so confused. I guess I didn't have Encephalitis, just brain swelling, but it bothers me so much now that I'm still affected by this thing that nobody knows what it was. I'm seeing my consultant soon. Any ideas what to ask?

[Kirk5w7]

6 years ago I was hospitalised with what the hospital called viral encephalitis, but they couldn’t identify the virus.

Now the brain has what is called the brain/ blood barrier which protects us from random viruses etc and there are very few that can cross this barrier.

When I was admitted to rehab because I had been so ill I had not been expected to live and I had to learn to walk, talk etc again. My consultant there said I had been suffering from PRES. That made sense to me when I researched it.

It is not a common illness and I can get it again, it is linked to my blood pressure and was probably triggered when I was fighting a viral illness.

I have lasting problems from this.

My consultant in rehab said I was only the fourth person he had seen in his career and that any hospitals would never see a case.

So I can’t help here, you could contact the Encephalitis Society and speak with them, they are very helpful.

Janet x