guidance investigation encephalitis

[Vethe3]

Hi there, I had viral meningo encephalitis 5 1/2 years ago. On Thursday, out of the blue all my symptoms flared up massively (aphasia, dizzy, nausea, super weak, uncoordinated, super slow processing time). Local doctor rushed me to ED where they did head scan and bloods. CT was clear (but so was it first time around) and bloods weren’t showing any infection. I had a very slight fever and inflammation marker was high. Because they couldn’t see anything nasty or obvious to treat, I’ve been sent back home. My condition hasn’t changed much in the last 2 days in spite of sleep nearly 20 hrs/day. I don’t have a headache (which first time I had insane head pain).

We have reached out to our neurologist (waiting to hear back) but fear there is something up as things really aren’t right. Any course of action we should look into (e.g. LP)? At the moment they said probably just exacerbation of symptoms but we think they may be missing something.

Any suggestion much appreciated.

[kitnkaboodle]

I’m sorry you’re feeling poorly. That sounds like a really extreme “exacerbation of symptoms.” I slept 20 hours a day when I had active inflammation.. Which “inflammation marker” was high? Lactic acid in blood? Sounds like LP is indicated. Maybe both viral and autoimmune CSF panels? Were you sick recently? Could be post-infectious E. And maybe also get a MRI, as CTs usually don’t reveal E. Obviously I’m not a doctor, so we will see what your neurologist says.

♥️

Kit

[Vethe3 in reply to kitnkaboodle]

my son had some sort of virus a couple of weeks ago which I picked up. I’ve been under my usual baseline since then but nothing like the last few days…my CRP was elevated but they didn’t run any specific viral panels which we only thought of in hindsight.

I’m glad to hear that it’s just not in our heads and that it might be a good idea to carry on further investigation. 🤞our neuro gets back to us soon.

[OldGnome]

That sounds VERY familiar! I felt almost the same during the first week of December. It really felt like I was getting encephalitis again during the first 3 days. I also had to sleep for 20+ hours, etc. I really just stayed in PJs and lived on the recliner during that time.

It ended up being the Covid bug again!! I used one of the tests that we get here for in-home use, and I contracted Covid for the second time, after being fully vaccinated, too!!

This might be what happened to you, and if so, there's no way of testing to see if you did, or not. Also, they can not tell which of the variants is was, either.

Getting Covid for the second time, really threw me back with regards to recovery. The fatigue and dizziness were quite horrible and I missed quite a few days of work, as a result.

Three months later, it looks like I am finally "bouncing back" and am once again resuming my snail's pace of recovery.

Hoping you feel a lot better!! Whew, what a ride this is!!!

OldGnome

[Vethe3 in reply to OldGnome]

I did test…4 x negative. But I think it might be another bug that scrambled the brain so much.

[listener24]

Hi Vethe3

So sorry to read about your recent problems, it must have come as a complete shock after all these years , so sad.

I get what I call flare ups now and again which I know now , ( I came down with encephalitis in October 2017) is due to me over doing things or stress or as usual not drinking or eating enough! Did you have any problems with daily life anyone /thing caused a stressful situation before this episode came on. Only trying to help but I do try to establish why I’m feeling the way I do, as I’m sure you do.

Sent with kind regards

[Vethe3 in reply to listener24]

I do have a few more things than usual to juggle but have also put boundaries in place to help me manage things and have re-established my priorities to give me more breathing space. I know stress can be harmful in lots of ways but that would have been a pretty harsh response. I keep looking after myself as I’m recovering and can’t believe how much I’ve been sleeping over the last few days!