|
|
| Steve |
Here is what happened.
I fell ill in the early part of Jan. I was ill for several days before the onset of the illness, and getting worse by the moment. I was resting on the couch as I did not feel well, one of the plant lights came on, and I wanted to turn it off. I got up to do so, and I noticed that my right side was going limp, but still not completely gone. Then when I got to the light, I found that I could not turn it off. It was as if I could not figure it out-- Shutting a light down. It did not make sense. The options of pulling the plug, hitting the switch, or unscrewing the bulb did not even occur to me. But there it was... I could not figure it out. I knew then that something was very, very wrong with me. Yet I could not express what it was. I also noticed, as I spoke aloud that I was quickly losing my ability to speak, and what I did say, was gibberish, the words I spoke did not make any sense at all.
I slept through the night, my wife deciding to let me stay on the couch. I slept into the next day, and she wondered what was wrong with me. She decided that it would be best to take me to the hospital, which she did. The motion of the car, and being upright caused me to dry heave all the way. And if that was not bad enough, at the hospital the real nightmare began... The condition was rapidly getting worse and I was beginning to lose consciousness. I went through two MRI's then the lights went out as I went into a coma.
A very strange thing happened at that point. I saw a number of very strange things. I could see my brain being "worked" on by someone with medical tools of some kind. I tried to turn my direction to the sound to see who they were but they vanished. Then, a most amazing thing happened... I saw my folks, my father, brother, wife and a doctor in the room together. Now, what makes this so strange is that I wear very thick glasses, so thick that I cannot see with out them. Now, even though I was in a coma, unable to see, and not having my glasses at the hospital, I saw them clearly, better than I have ever seen them before.
I heard the doctor say to my parents: "I just want to give you a warning... Do not get your hopes up too high, for a person in Steve's condition usually does not come back. And if so, they are quite disabled after." I heard this clearly, and wondered about it, for at the time, I seemed okay. And I also had a religious experience too, a NDE. Very profound and very intense.
What did I have?
ADEM (Acute Disseminating Encypalo-Mylitus), a rare disease. Or more specifically, a form of brainstem encephalitis that that I was told was first identified in 1941 and has since then affected about 1500 people worldwide. No one knows what cases it, and there is no cure. It just happens and those so affected usually wind up as vegetables or dead... very, very few survive retaining all of their functions.
My prognosis did not look good, for the ones that did survive were usually 5 to 7, with just a few in my 52 year age group. (In fact, I think that I am among the oldest survivors, but I will have to look it up). I survived it... Coming out of the coma after 5 days, and not knowing where I was or what was going on around me. My right side was gone, could not use it. And my left-brain was in limbo, not able to comprehend where I was. It did not look good. But I tried to grasp where I was, and it soon became evident that I was in a hospital, with nurses around me, and that somehow, I was there because something had happened to me. My right side was limp and gone, and I knew that this was the reason. And I also knew from the weird focus of my left-brain that the world was different than what I had experienced. And as I probed my thought processes things began to come back. But I could not talk until 15 days after, and only in very broken sentences. Eventually, my linguistic skills are very good, but my math, and other math related skills are pretty much gone. And my right side is back, but it feels somewhat strange as at times it does not feel like it belongs to me.
I also found that the doctors had cut a 5.5-inch slit in my head to get a portion of my brain for analysis, which of course they then sewed up. I suspect that much of my problems might be due to this, but under the conditions that I was in, the doctors had no choice. They had to know, but nothing was found... which they said is typical of ADEM, or brainstem encephalitis. They never identified what I had, but the MRI indicated lesions in my brainstem, the cortex not so affected.
Where am I now? I am coming back. Not fully here, but coming. And I want to thank everyone here for having prayed for me in this very trying time. I am a different person now, seeing things differently. It takes something like this to really change a person's perspective.
* Notes from Med Help.com
Brainstem Encephalitis is also referred to as Bickerstaff-Cloake Encephalitis. It is usually characterized by subacute (days to several weeks) development in adolescents and young adults of brain stem dysfunction, including ophthalamoplegia (can't move eyes) Facial palsies, sensory loss, dysarthria (can't speak right), deafness, and ataxia, and is associated with mild fever and an increased white count in the CNS. This entity may represent a mixture of true viral infections, post infectious syndromes, and the initial manifestations of multiple sclerosis.
If you wished to have an appointment at the Cleveland clinic you should see one of the doctors at the Mellen Center, which deals with multiple sclerosis and its look alikes. The Clinic has an 800 number 1 800 CCF CARE. Ask for the neurology appointment desk.
|
Steve
Flagstaff, AZ U.S.A.
Posted: April 7, 2003 |
|
|
