Yazmin's story

Hello Ingrid,
Thanks for the welcome. Well my story started 2 years ago March 10, 2007. For about a week and half earlier I got a cold that progresed into my sinusis and I did take an antibiotic, and it seemed to help but then the symptoms got worse with strong coughing and then headaches that were getting severe on the left temporal lobe side of the brain. It was better after a good night's rest, but as the day progressed the headaches got severe at night. So I continued to carry on with my days and thought well this will go away, but as a few days went by, I developed tingling in my right hand and got a bit confused with using my laptop. Then the next day speaking with someone I lost speech and just could not speak back , so a paramedic asked me to stick my tongue out an it went to the left which could be a sign of either TIA's or stroke, so immediately went to ER. There they performed various tests, MRI's, cat scan's, spinal tap determined that my white blood cell count was elevated.The doctors really were not sure what I had. They gave me acyclivor,other antivirals, since they were not sure whether it was bacterial or viral menengitis. I did not exhibit all the typical symptoms of menengitis such as stiff neck, fever , etc. I did have the small tia's everyday for about 5 seconds I would lose speech, and confusion, difficulty writing. The closest diagnosis they came up with was herpes meningo encephalitis. I was in the hospital for 2 weeks due to the antibioitic therapy, then went home with a pic line for continual IV therapy. I was very tired seemed to need lots of sleep, and forgot a lot of things had trouble with immediate recall, not past things, and was very lethargic because of the dilantin they put me on for the possible seizures, but they don't think it was really true seizures, everything was kind of sketchy a far as the doctors identifying what caused this, they think that maybe because of the herpes virus is the closest. I feel much better now, but still feel like stress affects me and still get a few pulses on the left side of the head daily but again as the day gets on and and I did have some tingling lately so I will be getting another MRI soon to check. So that's the story, I am definitely different in thinking process I feel slower than before, I am taking omega D which is helpful for the brain lots of salmon, any omega products. Thanks, Yazmin

By IngridGuerci
Posted August 24, 2009 at 7:08 am
Report post

You were lucky the doctor put you on acyclovir from the start. That's what my doctor did and I don't think I'd be as functional as I am now if he hadn't done that from my day #1 in the hospital. And, it sounds like you doctor had already seen a case of encephalitis. Lots of others here were told to go home, 'You have the flu; take this med' after they went to the ER.

Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)

By Thazooma
Posted August 24, 2009 at 10:56 am
Report post

"You were lucky the doctor put you on acyclovir from the start". This is soooooo true.

We were very lucky that after 3 ER visits in 24 hrs, a hospital admission with diagnosis of alcoholic w/drawal (where they came up with that we are still pursuing) that ended up a transfer to a mental hospital ( because the brain infection made him flip out, he became psychotic) where he had seizures and ended up in another ER, where he nearly died BUT it hooked us up with a neurologist who was help bent on figuring out what my husband had. Her "gut feeling" was encephalitis, even though ALL the testing came out NEGATIVE, she treated him with acyclovir. That "early" treatment of acyclovir I truly feel is what kept my husband from having more severe after E problems than he has/or that have shown up so far.

A note: the original diagnosis of alcoholic w/d done by an ER doctor, "the leader of the pack", lead the rest of the original hospital "specialists" to sit back and shake their heads, "unable" to move forward, unable to see outside the box.

"They" arrived at their diagnosis because I gave every single doctor (specialists?) and many nurses a thorough medical history of my husband for the 37 years we had been together. I was too thorough with his history but I was scared. He had never been in the condition he was in and I didn't want to leave out anything that might be of some help. Funny (not!) how a minor (6 months) part of his life four plus years before E overshadowed everything else.

We will be forever grateful to the neurologist that could think outside the box!

This site has been a big help. It gives us knowledge to go into the doctors with. My prayers go out to all of you that are struggling with E and post E. I admire your strength and courage!

By KiwiNicki
Posted August 25, 2009 at 3:32 am
Report post

I've found it very interesting reading your stories of how you were diagnosed and the process to get there - and the terrible errors in judgement that can be made. It was not easy to get anyone to believe that our daughter was very sick. We were enjoying a summer camping experience with friends (in New Zealand). For some time prior Julia was troubled with headaches that became increasingly worse - we still don't know if they had anything to do with it or not. Then on New Year's day she was ill and it did appear to be like a normal virus (she has always seemed to have a low immunity). As the day went on it got a lot worse so we drove her the one hour to the nearest hospital outpatients. She was there about an hour with the diagnosis being flu virus - go home - or back to camp as in our case. Overnight she started crying out very angrily, becoming more and more distressed with her head pain. As advised by the doctor we plied her with painkillers and endeavoured to make her drink water - with little luck. She then fell asleep for a few hours so we let her rest till she got up and stumbled off to the showers. I knew something was very wrong as she only had her shampoo - no change of clothes or towel. She angrily shoved me away as I offered to accompany her - I did so nevertheless as things were not right. The agressiveness continued but we, and our friends, thought she was being very teenagery and not wanting anyone to fuss over her. Back at camp she rested again, by then was not talking to us at all but continuing to text (sms) her friends. As she would not drink and it was hot we became most concerned and put her in the car to head back to hospital. By then we realised she was very sick and her head started lolling back as she sat in the car. I asked her friend to check her cell phone and we found out that she had been sending giberish and her friends were replying that they did not understand her. At the hospital she was taken into emergency and the doctor proceeded to query us on what drugs and alcohol she may have had and ordered a toxicology screen. We were adamant she had had nothing except some mixer drinks 2 evenings before on New Year's Eve and had been in our care ever since. It was a battle to convince him and I don't think we did. Nevertheless she was obviously very ill (and still very angry and agressive and could not be touched by any of us without screaming) so was admitted - to the children's ward as she was only 15. I remained with her, no tests, apart from a blood test. In the night she lost the ability to take herself to the toilet and so on. In the morning I was told the doctors would be around about 11 and I insisted tests had to happen NOW. At the time I was scared the headaches were a brain tumour or similar. A nurse realised things were bad and so doctors came, a brain scan done (with difficulty as she was thrashing around so had to be sedated) then lumbar puncture. Later that evening she went to intensive care as she was in a coma and 2 days later was flown to Christchurch hospital by air ambulance to be seen by neurologists and have an MRI. She had to be put into an induced coma for the flight and intubated etc. In Christchurch things happend fast and she was thoroughly tested, and I'm not sure what the treatment was, but basically they said she had to fight it herself. After a few days she was breathing on her own and regained consciousness. From then on recovery was miraculous, she had to relearn functions of toileting, eating, showering etc, but was pronounced well enough to commence high school (new school) 4 weeks after first becoming ill. That was the beginning of 2008. She does seem to have been very fortunate in her recovery and we feel very blessed as there was a time in the Christchurch hospital when the specialists told us we must be prepared for the worst. The dianosis - meningoencephalitis - and probably from the herpes virus. But they were not 100% certain by any means. We now live in Australia and as I have stated in our earlier introduction to Inspire she does have moments when her memory and concentration does not seem the best but she laughs it off as being a "blonde" moment.

By Dignity
Posted August 25, 2009 at 5:40 am
Report post

My experience was very similar to your daughter's experience, the Doctor's initially not taking my fever seriously and telling me that I had the flu.

For some strange reason, and probably because I was in my last month of pregnancy, I had a nightmare that woke me up and gave me a really strong gut feeling that there was something seriously wrong, although no apparent signs, yet, where visible.

On that gut, instinctive feeling, I pushed my family to take me to the Dr, and despite the Dr's misdiagnosis, I insisted that there WAS something wrong with me.

It was only when I finally managed to walk to the hospital, that I started convulsing, signs which started to alert my family and the Dr's that there was something wrong.

The Dr's then did the necessary, although could not treat me until my child was delivered.

I still listen to my instinct today, which saved my life, and it often still gives me good tips concerning treatment, and post-E. rehabilitation.

How is your daughter coping with rehabilitation?

Take care

Dignity

By muzzamo
Posted August 26, 2009 at 8:48 am
Report post

Hi KiwiNicki,

That seems like a miraculous recovery to me. Reading stories around here and also comparing with my own experience it would seem like she is in a lot of luck to recover so fast! Do you mind if I ask does she face any learning difficulties at school?

muzzamo

(Adelaide, Australia)

By KiwiNicki
Posted September 3, 2009 at 7:42 pm
Report post

My apologies to Dignity and Muzzimo for taking ages to get back to you.
With regards to rehabilitation, there really was not a lot of emphasis on that apart from the first few weeks in hospital where she relearnt the necessities of day to day life very quickly. After that the only instruction we were really given was for her to get as much rest as seemed necessary and take time off school if she did not seem to be coping. As it turned out she hardly missed any school - she was at a new one and really enjoyed it. There were no apparent learning difficulties, as compared to some kids in her class, and at the end of the year passed with a reasonable margin. She had in the past shown above average abilities in maths - post illness she started to struggle but teachers tended to think it was lack of effort. She has from time to time told us she can't concentrate or "get" how to do certain things, but so far nothing has occured to greatly alter her daily life. She puts things away in funny places and has just laughed it off - probably used to seeing her middle aged mum do the same thing just as often! We watch and take note and of course if it got worse would take action. Her GP did not seem at all concerned.

Welcome to Inspire!

Explore topics in this discussion:

6 replies

Add to the discussion

Group leaders

You