meningo-encephalitis?

Hi everyone...
I have been talking to lots of nice folks who have lived through encephalitis-- in one form or another.. although I usually identify myself as an E survivor, I, in fact, had west nile meningo-encephalitis (I hope this is spelled right and is the correct term). Are there others out there who are familiar with this? I have never had a decent neuro, so what little I really know is from websites and wonderful people like you... any help that you can give me would be greatly appreciated... I realize that having this info is not going to change my life, but I realize that I have to be my own advocate, so I like to try to be as informed as possible.. thanks, Lisa

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19 replies. Join the discussion

Hi Lisa, you've come to the right place to ask questions about encephalitis residuals. Some of the info you get may not change your life but, some of the things people talk about help you to be able to do things you didn't think you'd be able to. Why don't you ask some questions?

Ingrid/NYS
HSE 12/95 (I was 45 years old)

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My son also had meningo-encephalitis from an unknown virus (probably herpes simplex, but not sure). Our neuro told us that when they add the word "meningo" to the front of encephalitis, it means that the meninges (protective layer around the brain)were affected by the virus. There are definitely folks out here who had west nile...keep posting and people will respond as they are able.

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It can go the other way too
You can have an infection in the meninges and it spreads to the brain.
The two are touching and, well, infections that aren't taken care of, do spread.

Lisa,
You know, its not a bad Idea to see a wonderful neurologist at some point so you can be checked out.
There are a lot of things they can do to help you live with the after effects of encephalitis.
-dannon (had meningoencphalits myself)

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Thanks so much for the replies/info, friends..... it really helps to feel not so alone.... as to seeing a good neuro--I would love to, but have found mostly 'duds'... one flat out called me a liar, another said that I was bulemic, and a third almost 'killed' me by treating me with an iv medication for my migraines, and never ever called back when I had a major allergic reaction ( this was about 1 1/2 years ago, and have never heard a word from her since the initial office visit/consult where she prescribed this medication).
I will continue to watch this site for others who may have info to share, and sometime I would like to share more of my story (if it isn't too long and boring for others.

I do have 1 ? to ask... after my hospital stay for w.n. meningoencephalitis, I went home with an iv still in me, so my hubby could continue to administer my meds... after I had finished these, I had really no other interventions for this illness... I have heard others here say that they were prescribed therapy, contonued rest, pacing onesself for awhile, and going slowly back to work and other routines... I was told none of this, and after having been ill in july, went back to work full time with children with profound handicaps (lifting, carrying, positioning, etc)..I think that is why I am still so bad today (7 years later)...what do people think? could this have made me worse? I know that I cannot erase what happened, but I am just searching for all the info/help that I can find..being so sick and having so many issues, I have learned that I have to be my own advocate/caseworker, and seek to make the best decisions that I can with my good/caring doc.. I think for a long while my hubby and I relied on the docs to make me 'better'.. now we know that we (mostly me) really has to make the decisions and go with what makes sense to me...
anyway, so sorry to ramble on and on, but it is just so nice to finally have an outlet, a place where I can feel comfortable sharing my feelings, my medical issues, my frustrations and my emotions (especially when I am scared or frustrated or lonely, etc)
.... thanks for listening and caring enough to write back to me.. it is appreciated more than you can know!!! (as my goofy hubby says...) takey care...Lisa

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Dannon,
you said that you had mmmmeningoencephalitis too.. if you don't mind me asking, what things might a good neuro be able to do to help me live with the after effects of my illness? as you can see by the time of this posting (2:20 am), one of the big problems I have is with sleep...I can go days with absolutely no sleep, to the point of hallucinating.. seems I haven't been able to find a good doc for that either... seems most docs find all of my problems too intimidating, or too much to handle.....
thanks again for listening...Lisa

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Hello Lisa,
Having had West Nile seven years ago, must have been extra tough as the disease was new to North America then.

OK Lisa, if I could fully answer your question, that would make me a really really good neurologist.
Since we know I'm not any such thing, I can only give you a feeling of what a good (for you) neurologist may be able to do with you.

First you could be assessed.
Some of your problems may be neurogenic and some may be psychogenic.
There are medications that help with cognitive deficits, fatigue, tremors, seizures, motion disorders, dizziness, pain and so on. There are therapy courses for cognitive problems. There is testing. Then there are psychiatric issues where a neurologists referral and involvement can be beneficial.
A neurologist can monitor you status and tell if you are developing new problems.
As far as the motion problems many WNE survivors are left ewith, I don't know what a neurologist can do, but I can't think of any other kind of doctor who could look in to that.

Here's a list of hospitals with highly rated neurological units -- see if one is near you?

http://www.usnews.com/directories/hospitals/index_html/specialty+IHQNEUR/

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Dannon.. thanks so much for the info.. if you were a super neuro, I am sure you would be rich beyond your wildest dreams, since I know there are lots of people who would flock to you!!! Thanks for the hospital list.. I have been to mayo 2x... the neuro only looked at my migraines, and for possible ms, never addressed my w.n.v. ... maybe my fault, because I did tell them all about it, but guess I should have been more assertive about having them assess me for it further! I did go to their 3 week pain clinic, and their week long fibro clinic... cleveland clinic is sorta close..it may be worth looking in to....right now, as I still do not have my disability, it is difficult $$wise to think about going there..plus, it is sooo difficult for me to travel...
anyway, I do so much appreciate all your help...Lisa

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Well, it sounds like you went to the mayo clinic and told them about your headaches and something else and they checked you out - and I assume - offered some sort of treatment -- that's what a neurologist would do.

What problems do you have that you feel haven;t been looked in to?
-dannon

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Don't worry about long posts and there isn't much chance you can bore anyone.

I don't much about your type of E, but most of the time we don't get enough information because we don't know what we need to know or in my case I forgot what is said.

I walk where ever I can because I hate to travel. I hope you get a doctor that can help you.

Michelle

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Hello Lisa -
I had the exact same illness -meningo-encephalitis.
It was 18 years ago and I was cared for the same as you were. Can I ask how are you physically? Physically I'm fine but it's all with my brain that has the problem still. Is that how you are? Read my story and it will tell you what happened to me.
Once I was done with some outpatient classes, I was basically left to myself. No guidance on how to improve. They made it sound like 'you are set in your ways' - UG! I didn't have a job (stay at home mom was my task to accomplish) and to this day I know I can't have a normal '9-5'- job being as I'd be unable to remember facts and names and what-nots. I could see how you going back to work so soon would have been too much for you. Oh... we could talk forever.
Please let me know physically how you are doing.
Thanks
Marianne

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Thanks for sharing... Physically and mentally/cognitively I am not doing well... I had to quit working in 05, which was sooo hard for me, and have been fighting for my disability since then...symptoms and health problems I have include... fibromyalgia, chronic fatigue syndrome, several sleep disorders (apnea, chronic insomnia, RLS and PLMD), hypothyroidism, very low levels of human growth hormone,myofascial pain syndrome, adrenal problems, migraines, DDD, DJD, chiari's malformation, chronic low levels of most vitamins/minerals, high blood pressure, etc... the worst things for me are the overwhelming fatigue(I call it exhaustion), pain and weakness, sleep problems and cognitive issues...
after leaving the hospital after staying 10 days, I went home with an implanted iv, so my hubby could give me meds.. and after my PCP took out that iv line, I had no other interventions/therapies/etc..
... now I see a wonderful pain management specialist and a doc for my thyroid (who my pain doc recommended)...my doc is almost a 5 hour drive away and we have to do that once a month, but he is the first doc who 'had a clue'.... I am pretty much housebound, and drive only within a mile of home.
.. I could go on and on, but it would be much of the same...
...Marianne, after finishing this, I am going to read your story, so maybe next time we 'talk', I will have a better understanding of what you have been through..
.. take care, and look forward to talking to you soon...Lisa

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Dannon,
Do you take anything for your insomnia? I take 100mg of Trazadone and it has worked pretty well for about a year.
Julie

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I have tried everything known to man for sleep and nothing works for long..I even used ritalin for a couple weeks and then it stopped helping...have most recently tried chloryl hydrate and the legal form of GHB (can't remember its real name)... Lisa

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First I had HSE. Then several years later i had meninogoencephalitis when the linings of the skull get infected. A few months after that i go organ failure.
Mariann

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Mariann,
sorry to hear about all that stuff that happened.. how are you doing now?

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well i dont know how much this will help but here is my story lika. i dont type well so bear with me . i had west nile in 2002 or perhaps 2003 . i never saw i doctor for it for about three mo . i slept most of that time and functioned at a minamal level . iwas dianosed with a infection and given benadrel when i first presented with a rash and anger problems . maybe hats why i slept for so long, anyway my daugter who happens to be a nurse convinced me to return to a dr for another opion . he tested me for various things came back west nile .remember iam still sleeping and taking naproxion for a foot injury [ iwas off work when this first happened forgot to mention] took alot because of the pain dont think it was the foot but the west nile . the doctor i saw called in 28 days his nurse on the phone said you want good news or bad news then said the good news was i would never get it again badnews was i had west nile and hung up !! i called back talked to the dr and went to see him he said i should be over it in a few days ! now this is @5 mo.after the rash . this is going to take to long so i will try dot points ? after six more mo having fatigue ., memory and a host of weird stuff . i deanded another dr was sent to a infectious disease dr . he confirmed mengio-encephilitis etymolgy west nile . from what i was told mengio is mengetis the swelling of the outer brain that affects motor skills and vision then encephilitis was the inflamation of the inner brain which involves memory and speach etc. now i put up with the and i quote the dr . there is nothing we can do or will do and good luck . i have other patiets worse than you you may get better or worse . now i was working at the time and i am 50 years oldd not good but i manage with the help of my coworkers to stay at work though i had to be told step by step what to do and carried cheat sheet [still do ] last year at54 i could go on sick leave till i could retire .i then started to pursue answers in depth . i started with my gp and got to a nurologist and then to a neuropcholigist .test was done on me by the neropchlogist [ another note dont call them pchoneurolagist ] i did and really couldnt get it straight makes them mad . i was also seeing a psho therpist or [ i know the spelling isnt right but i have been doing this for hours now. ] for anger and frustation that is a important step really as it starts the paper trail . after all that and the papertrail . which i will reiterate firstt gp then therepist ,,,then the nuroligist have him send you to the neuropsholagist,,,,who will your brain function then back to neroligist who sends you to the thereapist to understand the nerophscohologist. who [ the therepist] at that point has been documenting all your frustration and anger at the doctors for not knowing very much about a rare and unique desese ,,,, then off to the local and i do mean local social security office ...go in tell them what is going on and you cant work because 1.. you cant remember two ,, you cant stay awake three ...you get angry at any questions or at least i do and then they send you to thier neropshogist [ the ssdi peoples] then about six weeks later you get notifed as i did today that it was approved for me and my dependant daughter with it it will be retroactive back to when i left work !!!! that is a quick jouney though the hell iwent through since i got enceph two divorces,, child custday and loss of most of my cash on hand to spouses and lawyers for the divorce nothing to a lawyer for ssdi the papertrail from the above and social security people took care of that . i hope this makes sence and i know many of you can relate to my typing to it sure is hell trying to remember the words ...i can talk a lot better than i can type ...... this site over the yeas has kept me from going crazy and i thank all of you but hafter about fours hours iam done thank you all lee

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dearest ironrider, thank you so very much for your reply...I understand how much energy it took for you to write to me, and that makes me even more appreciative that you took the time to write... boy, you have been through alot..to hell and back is right!! congratulations on getting your disability/ss for you and your daughter...I have been trying for more than 3 years, but mine is through my state teachers system, and they are horrible..I taught for more than 20 years with profoundly handicapped/sick children, and when I get sick, too bad!! one of their secretaries even had the nerve to tell me that I was just basically lazy, and that if I would just get my butt up off of the couch and try I could work!! caring, huh?
thanks for the explanation from your docs about the meningo-encephalitis...I have not seen a real doc about it since I had it in summer 2002, and then the neuro only saw me 1 time for a few minutes... after being in the hospital for 10 days and then going
home with a PIC line (I guess that is what you call a line inserted into your chest that delivers medicine straight into your heart) for another 2 weeks, after having hallucinations, and now have all sorts of problems..I was like you and worked too long, until I kept passing out at work and became a hazard to the kids I taught..I know that I have brain damage from the west nile, and it shows up as my fibromyalgia and chronic fatigue syndrome and low human growth hormone levels and hypothyroidism and sleep problems and memory problems and on and on... I worry that I don't make sense sometimes, so my hubby helps me by reading and correcting my letters and e-mails when he can.. otherwise who knows what I may say when I am trying to say something else...
... well, this is really long, and I don't want to wear you out anymore than you already are... thanks again for writing and sharing..please keep me up to date on how you are doing if and when you have the time and energy, and if you want to... take care, Lisa

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Welcome to our group Lisa. meningo is short for meningitis - Inflammation of membranes surrounding the brain. Specific details can be found at http://www.cdc.gov/meningitis/index.html for reference.

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...sinceage1,
thanks for the info.. I looked at it for a few minutes, but plan to spend some more time exploring it later when I have the energy.. have a good day...Lisa

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