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| Annette |
My name is Annette. I was 27 when I was first taken ill with encephalitis. This is my story.
I got sick in 1991 at that time they didn't know how to treat encephalitis and not much has changed since. They gave me open lines of antibiotics and steroids all kinds from what I can gather, they then put me on a respirator to hyperventilate me while also dehydrating me. The principle being that if they dehydrated me and hyperventilated me the hyperventilation would decrease the swelling in my brain by pulling it down into my kidneys.
I was in a coma for 2 weeks; I came out of the coma and stayed in the hospital about 7-8 days. I had no long-term memory, and still do not, and short-term memory was terrible. I also had light sensitivity, terrible headaches and had difficulty hearing at times. I was unable to do anything for myself, and had to relearn everything. I also had some left side weakness and neglect (didn't recognize the left side as mine).
My hospital experience after the intensive care unit was not a good one. The doctor at that time decided I needed to be institutionalized, my mother obtained guardianship of me and she took me home. I was able to relearn most everything regarding my day-to-day stuff. I knew how to do stuff but did not know how I knew. I also would at this time have wild mood swings, and would go off and be lost for hours.
I received no services when I returned home until my mother and husband decided I should return to work. My place of employment directed us to a neuropysch doctor who helped tremendously. He tested me and learned my deficits and work on them. He pushed me to learn to control my mood swings, which could be violent at times.
I was only concerned with returning to work, which I did, on a limited basis for a while prior to returning full time, after being home 10 months. At that time I stopped seeing all of my doctor's except for my regular doctor. As for seizures that has been undetermined. There were and occasionally still reports of severe shaking when I am in a deep sleep, so I have opted to avoid REM sleep since I am also an insomniac.
Now 8 years later I am now realizing how much was lost and I'm seeing a new group of doctor's.
Almost all the problems have remained and long term memory lasts about 5-6 years with some retention but not a lot. In Feb 1999 I got laid off from my job, which I had returned to after about 6 months I was/am a Physical therapy assistant. I was laid off for number of reasons one being I had stepped down from managing sites to being a staff therapist and two, my worsening memory. I underwent retesting (neuropysch) in Dec. 1999 and Jan 2000. Which showed that I was at the same level as when I had returned home in 1991 plus some other new deficits.
In Feb 2000: I awoke one Saturday and that is all I remember about that day except being in an ambulance with someone pinching me. My husband said that all day I was sleeping or just out of it and kept walking into doorways on the left and dragging my left leg. My speech was very, very slurred and I was very argumentative and refused to go to the hospital. I finally agreed and was taken by ambulance at the hospital. They did a cat scan to determine if I had had a stroke or traumatic brain injury, which ruled that out.
They then sent me home as I had a long neurological history secondary to the encephalitis. Ambulation and other cognitive function were very difficult at this time also my speech continued to be slurred. Even sitting up was hard, as I would fall to the left. On Tues I had an appointment to see my general practioner who made an appointment for me with a neurologist. Riding in a car was very difficult, as it would start the twitching in my arms in legs. I also noticed these twitches when I was just starting to fall asleep at night. The new neurologist ran all kinds of tests and all came back negative. We looked for any information on post encephalitis and finally talked to a doctor at the CDC who stated there wasn't any data in that area and there is no proof that once the virus is gone it is gone. The only documented reoccurrence was with herpes simplex encephalitis. And the 5 yr results of encephalitis lethargica.
My neurologist now treats symptoms, which is very difficult as they change and some get worse. We have now determined that what happened was a reoccurrence of the encephalitis. Not as bad as the first episode but is more devastating in its own way.
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Annette
Massachusetts, U.S.A.
Posted: April 17, 06 |
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