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meningoencephalitis

N3771 profile image
7 Replies

Hi.

I’m new here having come to the party late 😜

In February 2018 in was hospitalised with a mystery illness that kept the doctors guessing for quite a while. I was initially diagnosed with encephalitis but things didn’t quite add up and after lots of tests I was finally diagnosed with meningitis and encephalitis caused by the varicella zoster virus ( chicken pox)

Is there anyone else on here that has also been diagnosed with meningoencephalitis?

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N3771 profile image
N3771
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7 Replies
lbuckie profile image
lbuckie

I had encephalomenigitis in 2015. I was hospitalized for 1 month in a dark room as I could not tolerate light and sounds. It took 2 weeks for them to diagnose. I spent 3 months for home recovery. I remember having pain in my neck, back and legs. As well as severe head pain. How I got it? Not sure. It has changed me I can't work 8hrs a day any longer, loud sounds & bright lights bring on anxiety. I have 3 areas of my brain injured so I have issues with short term memory, lose my cognitive if I work long hours and balance issues. Despite these issues I know my limitations and am able to somewhat monitor my issues and adjust my life. I wish you well, listen to your body.

N3771 profile image
N3771 in reply to lbuckie

Thank you for the reply. Your experience sounds all too familiar! I spent my time in hospital wearing sunglasses and thank goodness for eye masks.

I had to take early retirement from my work as a dance teacher and I’m often overwhelmed by crowds or noise. Panic attacks and migraines are a huge problem but I take each day as it comes and only do what I can.

TheLittleLisa profile image
TheLittleLisa

yes! When I was 7 years old, I was hospitalized with a mysterious illness that caused right side spastic paralysis. I could not speak or walk in a straight line. Doctors eventually said it was most likely meningitis and encephalitis, and that it was probably caused by the chicken pox virus (I had had chicken pox the previous month). Are you suffering from any residuals?

N3771 profile image
N3771 in reply to TheLittleLisa

Hi. I’m suffering from migraines and anxiety really. I have up days and down days and some pretty awful panic attacks which can throw me off kilter for months. At present it’s crowded spaces and noisy environments that floor me!

Walkingintheforest profile image
Walkingintheforest in reply to N3771

Hi there,i just want to share my recovery (some good news at least!!) i got diagnosed viral menintigitis in march and it took until this week (beginning of july) that i have pretty much no symptoms at all anymore.i also had panic attacs and aweful anxiety and weird feelings over the last months,sometimes took tavor i had the feeling of not having control over my body (high blood pressure,head pressure, feeling of numbness,anxiety) it took a while but now it s all gone!!! Only office work makes me feel a bit sick and i cannot handle crowds of people at thr moment as the feeling of anxiety comes back.but i think it takes many months until it s getting better.i am glad i can live a normal life again and i pray for all of you out there to fight meningitis!!!!

peechesgirl profile image
peechesgirl

yes I had that back in 2011. I was initially diagnosed with meningitis but after a week in the hospital they had my spinal fluid in a Petri dish and they looked under a microscope and found out it was encephalitis with meningitis caused by being exposed to the chicken pox virus. They had put a PICC line in my arm and sent me home with acyclovir and a home nurse to come everyday. I too had to be in the dark and it felt like I was living in a fog. I was given an MRI and the dr said it is a miracle I didn’t have brain damage from them taking so long to get me on acyclovir. Scary! Then in 2015 I got meningitis again but it didn’t turn out to be paired with the encephalitis. I was told I would never have meningitis again and then 3 years later it happened! I’m always on edge about catching it again. After second bout I’ve been tired, more headaches and brain issues. No doctors know about what to do or even believe you though. I pray your full recovery! This disease is no joke!

LuLu2023 profile image
LuLu2023

hi I was originally diagnosed with encephalitis and my last and only neuro appointment then said it was a mix of meningitis and encephalitis too. To this day I have no confirmed diagnosis.

I was nurses in a general ward and as staffing was poor I was not treated well at times. My speech was incoherent, mobility poor and my behaviour erratic. They said I also had delirium.

I’m suffering with fatigue and headaches and some difficulty processing information. Had little help at work and doctors don’t understand. But I am still here! So happy to chat with folks experiencing difficulty too. Perhaps we can problem solve together!

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