Encephalitis

paddylanger

Hi all,

Just wondering if anyone would like to share their stories of encephalitis (Brain inflammation).

I suffered this when i was a baby, so i don't remember too much about the ordeal. but i am sure there are long term residuals that i am still dealing with today 36 years later.

unfortunately because i was so young when i had encephalitis, it means i don't have a before and after picture. All i know is that its been a roller coaster of a ride. stats show that in recent years there has been only 6 or so cases a year in ireland. so we are few and far between.

it might also explain why so little is know about it here. i have had to do pretty much my own research to try and give myself some understanding. but i am also aware that diagnoses are somewhat like horoscopes and patients can read into them what they think fits them.

So if anyone would like to share their experiences and especially if they have any long term neurological and/or psychological impairments that they feel is related to the encephalitis please feel free to post here or pm me if you prefer.

Many thanks

nojnoj

paddylanger wrote: »

Hi all,

Just wondering if anyone would like to share their stories of encephalitis (Brain inflammation).

I suffered this when i was a baby, so i don't remember too much about the ordeal. but i am sure there are long term residuals that i am still dealing with today 36 years later.

unfortunately because i was so young when i had encephalitis, it means i don't have a before and after picture. All i know is that its been a roller coaster of a ride. stats show that in recent years there has been only 6 or so cases a year in ireland. so we are few and far between.

it might also explain why so little is know about it here. i have had to do pretty much my own research to try and give myself some understanding. but i am also aware that diagnoses are somewhat like horoscopes and patients can read into them what they think fits them.

So if anyone would like to share their experiences and especially if they have any long term neurological and/or psychological impairments that they feel is related to the encephalitis please feel free to post here or pm me if you prefer.

Many thanks

Hi Paddy

I work in this specific field and I would suggest you check out www.encephalitis.info they have a support email portal and a direct phone support line 01653 699599 they are a charity. They will be happy to advise you where they can. It will be in confidence. I hope this helps!

paddylanger

hi nojnoj,

thanks for your reply. yeah i've found out a lot at encephalitis.info. its a great site and resource and i would recommend it to everyone. its been a great help to me on this journey of self discovery.

And in fact it probably saved me from thinking i was going mad or indeed that my challenges we not just character traits i was born with.

to expand a little further for my own situation. i recently i found out i have very similar symptoms to aspergers syndrome. my psychologist actually brought it up. which did take be by surprise but i have an open mind and willing to explore all the possibilities.

i suppose all my challenges date back as far as i remember. As i was so young when i had encephalitis i don't have any knowledge of me before encephalitis. So can't really compare it to the me now to see how it truly affected me.

there is indeed a big overlap between the long term sequlae of encephalitis and aspergers. and even Hans Asperger mentioned in his study that Encephalitis can cause Autistic-like symptoms.

i was in and out of hospital numerous times up till the age of 2 and survived death a few times (my mum still starts to well up at the thought of it and indeed i can't imagine the trauma it must have been for her and the rest of my family)

so after age 2 thankfully i haven't had much physical symptoms that would alert doctors or indeed my parents that anything was wrong and i seemed to be hitting all the marks for a developing child i.e walking talking e.t.c.. despite my selective mutism, anxiety and especially social anxiety, depression, speed of thought and language processing and numbness of emotions.

I guess that it was the procedure back in the late 70's in ireland that if the patient survived it was deemed a success story. Deep down i knew something was wrong. but i couldn't express it or put a finger on it myself. All i knew at the time was i was very sick as a baby, so i just ignored it all and tried live as best i could with very mixed results.

Unfortunately looking back now that i feel that it is more than a physical illness and although i was unable to describe what was wrong , i always knew something was up. especially watching other kids growing up and how they interacted with apparent ease . so i just built coping strategies to get me through childhood as best i could and play the cards i was dealt so to speak.

unfortunately the same coping strategies don't work in adult life and when at the end of each day you are emotionally and physically drained from just trying to be normal and fit in. it does take its tole.

I've also had a look at encephalitis global at the inspire site but again a lot of the people there, are people that suffered encephalitis as adults. so even there i felt slightly out of place. Although it re affirmed my initial thoughts that the encephalitis had affected me more than i had ever given it credit for. up until 2 years ago i had never even considered encephalitis as a possible root for certain challenges.

My current doctor doesn't believe that something from way back then could still be affecting me now. but with only an average of 6 cases a year in ireland, i guess chances are i'm the first person he has had to deal with that has had encephalitis as the information from encephalitis.info and encephalitis global suggest otherwise. Too many co-incidences of the people still showing similar problems many years after the initial brain infection has being treated.

thats why, in a way, it was a great relief when my psychologist suggested aspergers. A. because its not something i had self diagnosed and B. there is tremendous overlap between both conditions that finally i feel someone finally understands.

So wether i have aspergers or an Aquired brain injury from the encephalitis at least now hopefully i can get and learn some tools to manage day to day living better and hopefully instead of focusing on what is wrong with me i can see it as a difference rather than something holding me back.

i did investigate and explore aspergers a bit more in the last few weeks. i am surprised that apart from hans asperger mentioning encephalitis that very few other experts do.

I am also surprised that no one else on the encephalitis side seems to mention aspergers . even though when one lists the residuals there is a huge overlap.

One thing i've learned is that diagnoses and especially self diagnoses are like horoscopes and people can see in them what they want and believe which ever part suit them.

jaysus, a long winded post to just say thank you. my apologies nojnoj and anyone else reading this.

Feel free though if anyone wants to add their 2 cents.