My husband was diagnosed with limbic encephalitis on 13th July 2012, after 14 weeks in hospital, he has been discharged and will be seen as an outpatient.He is very depressed, angry and still having a lot of twitching in legs and arms, also headaches.He is on modafinil & concerta xl,due to steroids for 11 weeks he has put on a lot of weight and his right foot is swollen a lot as are his hands...Anyone else having or had these problems after diagnosis and what help was given?>
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Thank you all for your stories, it's nice to know we're not alone sometimes :)
Blessings,
Meagan
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my own story mirrors many of the ones already posted here. but what many doctors dont tell their patients is a condition called post encephalitic syndrome. because encephalitis causes different types of damage and we are all different to begin with and it means that there is a spectrum of residuals and the post encephalitis residuals are slightly different for each of us as well. but there is many common themes.
i had encephalitis at 2 months old. i always thought my residuals were just the way i was. character traits i was born with, but at 36 i have found out that infact the majority of my problems have their roots in encephalitis and the consequences of the disease.
the good news is that in the definition of post encephalitic syndrome it states that it is often reversible. but each issue has to be dealt with on its own and with proper management tools can be given to help us do the best we can.
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hi everyone
from this topic i get some relaxation that there are also other people suffering from this disease and also recovered
my brother 11 y o was attacked by post encephalitis sequele two and half months ago but in govt. hospital they didnot recognise it and discharge my brother, that there is infection in his throat and because of high fever he was not able to talk and was in critical situation for night. in morning he was good talking to us walking on his own feet recognizing people. but next day he was falling. we thought it is because of weakness we give him drip for weakness. but situation was same as well. then we took him to hospital but they just gave him weakness tablets and said he will be fine. after using tablets he was good for a day or two but again he was started to falling and also facing difficulty in talking he was speaking slowly and thinking a lot much which was unusual for us.
seeing his condition we took him to other city. there one doctor gave him some medicine of energy and said that he will be fine soon. but instead of improving his condition get worse and worse and now he was falling 10 to 15 times a day. and his voice was also getting slow some time he was urinating in his clothes at night and some time just sitting and talking with us and he did urinating and he couldnot even know that he did it.and sometime he was getting up at night and weeping and other time laughing like mental people.he was in 4th grade but now he cannot remember alphabets of english. but still can recognize different places and closest relatives. last day i called him and he knew my voice and said that this is u.
after this condition we show him to a neurolgist he admitted him for 4 days and did several tests such as blood tests, mri of spine with contrast, mri of brain with contrast, ncs/emg, eeg. but all tests were normal. the doctor said that he is been infected by post encephalitis sequele .he prescribed three type of tablet to him.after taking tablets he was recovering slowly slowly. now after 40 days of using those medicine there is improvement in his falling and off balancing. now he cannot fall even 5 to 7 days. and may be one or two time in a week. but now there is mental problem for him he couldnot concentrate on thing, he forget things where he put. last week his mobile was fall in water and was in water for 10 hours but he couldnot remember where it is. he can talk with difficulty and he can hardly talk on phone. peeing in clothes is maximum and water coming out from his mouth. which now really hurting us. because we dont know much about this disease and dont know that whether these symptoms are of this disease or other. he is the younger one and all family love him a lot. but because of his condition every family member is very tense including me now writing that post is worried and feared that may be he is gonna die which will be not toleratable for us.
now if there is any doctor or physician who can guide us that all that symptoms are normal with this disease and he is gonna recover soon and give him same medicine and wait. or we just change our doctor and consult other one. because my brother is our life and we couldnot see him suffering like this way. it really disturbed our whole life. because i am working in other city and couldnot see him with my own eyes daily.and even couldnot concentrate on my work.
what good improvement i saw in him last time i meet him that he was playing cricket with me . he ride on bicycle, he is playing computer game but wasnot as good as he was. he can remember little of his holy prayers. and can go to second floor using stairs without any support.
but still worried pls some one give me some suggestion what to do
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Amazing! I think I found this site a few years ago then forgot about it. It would be nice if it was study.
Carrie
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42 years ago.. If you have it now I hope and pray you are getting the help you need
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I have found the defination of me in allot of what is bieng said on this fourm i am now 50 and suffered it when i was 13 i have never had a memory since i am a songwriter who cant rembember the songs i wrote i suffer depression and anxiety am easly confused and never knew why unfill now before i had it i was recomended to mensa whith an iq of 160 and after quickly failed out of high school. I own my qwn bis now and have a great family 30 years married with 3 boys and 3 grand children its nice to know why but i still want to be better!!!
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Thank God for this website. I was diagnosed at 23 in 1979 with viral encephalitis. The 1st symptoms were the severe headache and inability to make change for a sale at the store at which I worked. When my mother took me to the doctor, he knew it was serious, but had no idea what was wrong. By this time, I was sleeping most of the time, along with the debilitating headache and nausea. The original diagnosis was "psychotic depressive"! Luckily, I went into a coma 1 day prior to beginning shock treatments. BTW, I had been placed in a psychiatric facility by this time. Once I was in the hospital, I was in a coma for 2 weeks, had lost 40 pounds. My feet were blocked to preventing permanent pointing should I recover and I was told I had tubes coming out of everywhere. A nurse actually figured out what was wrong with me, thankfully.
Like others, I don't remember very much about the hospital time and I was there 9 weeks. The doctors placed me back at the psychiatric facility/rehabilitative facility for an additional 6 weeks. Like you, I had to learn everything all over again - writing, reading, math, tying my shoelaces, zipping zippers, etc. The frustration that goes along with all of that is overwhelming. My parents became overly protective (can't blame them), but that only added to the frustration. After only 5 months, I started working again, just getting used to being back out in the world part-time. Then 2 months later, I went back to work full-time.
I am now almost 57 years old and have had a wonderful life so far. But, I have times where it is hard to write. Printing is no problem, but cursive still is a struggle. Lots of joint problems, but I don't know if that's a residual effect or just getting older. I used to have problems with finding the right words, but that has gone away. Most people would say I have no problem with having something to say.
Don't know if ya'll have had the same thing happen to you, but when I tell people that I had encephalitis they are surprised. It's how they follow up with questions that amazes me. When they ask about what can happen to someone, I tell them "you die, you get well, or you become mentally incapacitated," they ask me which one happened to me. I know they're trying to be funny and they really don't know what to say, but it just shows that people can be unkind. It's been so long now that I normally don't think about it or tell anyone. As I get older though, I do wonder if the issues I deal with have something to do with what I've been through.
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i am mother from sri lanka.my 2 1/2 son suffered with encephalities two weeks ago.he survived safly.doctors suspected it as an encephalities. he faces with facil palsy.now his eyes recoverd. can walk & run.but hismouth is still recovering. but i am so upset about his future. his memoray is well. couldn't identify any differance. nice to hear your voice.it helps me lot .HOPE MY LITTLE SON WILL BE OK
ROSHANIE
SRI LANKA
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