Monday, July 18, 2011

Korsakoff's Disease, my long road to diagnosis

I promised some friends in a Facebook group I would post this. In 2005, I was hospitalized for Wernicke Encephalopathy. I was in dire straits. I recovered. That's the simple, short version. For the longer version, and a really good story if I do say so myself, please purchase a copy of Green Goblin, the little book I wrote about the experience. It's the only book of it's kind about the disease. Click the title in the picture on this blog and it'll take you to the book.
   What I want to talk about now is what came after the Wernickes. I have Korsakoffs.Don't worry. It won't kill me.
   My doctor in Cleveland wasn't thrilled when I told him I was moving to Michigan. He was quite impressed with the care I received at Hillcrest Hospital in Cleveland, and the quality of recuperative care I got at Willow Park, also in Cleveland.
   But there I was, in his office, weeks later, very much alive thanks to the good people at the aforementioned places, and I was telling him I was going to move to Northeast Michigan. He reacted like I told him I was moving to Siberia. He said, "Within three months there, I want you to see a neurologist. You're probably not done with this yet and you're going to need help."
   I agreed. I forgot I agreed, but I agreed.
   A couple of months went by. My wife and I were living with her mother until our house in Cleveland sold. I was trying to write books and didn't want to admit I couldn't do it. I couldn't string words together. I've mentioned this in previous posts, so I won't dwell on it here. I had to teach myself how to write again, so I typed other people's books.
   What I didn't do was look for a neurologist. My wife asked me about it once or twice, and neither one of us could think of what I would tell a neurologist if I did see one. I wasn't exhibiting symptoms of anything that I could think of. I had my balance back, my weight was coming back, and I was sober. What more could there be, and what could a neurologist do for me?
   Six months after we moved to Michigan, I took a part time job. I worked at one of the 10 biggest restaurants in the U.S. Still work there, in fact. My job was cleaning things like the kitchen floor and the bathrooms. I wanted a job that didn't require a lot of thought so I could focus on writing the books I wanted to write.
    I did that for six months before the neuropathy set in. Some days were worse than others. Pain, sometimes wracking pain, filled my legs. Sometimes the pain was in my groin. I went to the MedExpress a few times for the pain and they would prescribe drugs. The drugs helped, but I knew how I let alcohol drive me and I worried I might get addicted to the drugs. So... I usually threw away at least some of the prescription. Other pills I cut in half.
   One of the doctors thought I might have testicular cancer. He sent me to have an ultrasound. You know, as much fun as it might sound to have a female smear gelatin over, and rub it with a wand, it really isn't. Trust me on that one. No cancer, by the way.
   Then I went to a family physician. He's my regular doctor now and he's a good one. We still didn't know what I was suffering was neuropathy. Wernickes is rare in the United States (thank God), and he admitted to me later that he didn't know much about it.
   He sent me to have an EMG test. That's a fun little test where put needles in your arms, legs, neck, and shoulder--wherever there might be neuropathy--and run electricity through it. It's not fun. Hurts. The guy who administered the test left me alone--with the juice on!--for about five minutes while he took a cellular call from his daughter. He's lucky I didn't strap his happy ass to the machine when he came back in. It was a close thing.
   Went back to my physician. He said the tests didn't show any conclusive results. He was quite happy to file a complaint about the guy who walked out of the room on me while electricity set my nerves on fire. Then he sent me to a neurologist.
   That neurologist wasn't the sharpest knife in the drawer. He sure thought he was, but at least when it came to knowing about Wernickes and Korsakoffs, he didn't know much at all. He banged my knees with  a tuning fork, and my toes, etc. The big toe on my right foot tingles and goes numb sometimes. He said that was neuropathy. The leg pain, he said, is not. He was wrong about that, by the way. Quite wrong.
   I brought up Wernickes. He said, "You're over it. Forget about that. It isn't your problem...unless you're drinking again." I assured him I was not.
   A few months went by. Months of sometimes bad leg pain, sometimes not so bad. I started to research Wernickes online and found a group online. One of the people who participated in those discussions was with a treatment center in the United Kingdom. (Hi, Karen!) She told me about treatments with vitamins. I had been taking thiamin because it seemed like a good idea to take supplements of the vitamin that I was missing when I fell ill in the first place. She told me that some patients respond well to very high doses of thiamin (which is Vitamin B1). I started taking it and it helped. Now I take about 2,000 MGs of it a day and am almost pain free.
   By then I was working in a different department in the restaurant, one that required some thinking. I was working in the accounting department. Memory problems revealed themselves. Not only would I forget things--which everyone does. I would forget I ever knew them. There were holes in my memory. Big ones, little ones. Holes.
   I got a bad performance review because of those holes in my memory. That bad review was what I needed. Not to shape me up, because I'm a good worker. It was what I needed to take to my physician. It's kind of a strange things, but American doctors typically don't address memory problems until they're documented by an employer, educator, etc.
   My doctor grew quite concerned. My memory problems were not normal, especially for a man my age. I was 42-43 at the time. He ordered an E.E.G. I was epileptic as a kid, and we thought my problems might be related to that. They weren't. My E.E.G. results were fine. Then he sent me to a different neurologist.
   That guy was good. He tested my memory briefly in his office. That bit you might see on detective shows...where the doctor tells someone to remember 3 things and then talks and talks and asks what the 3 things are... He did that with me. I couldn't remember one of the three.
   He looked over my medical history and said, "You have Korsakoffs."
   I said, "What's next?"
   He was quick to point out that there is no cure. He said it wouldn't kill me, but there was no cure. I don't know what kind of reaction he thought he was going to get. I looked at him and smiled. He started to say something else and I stopped him. "We'll see about that," I said.
   I was scared, but I was smiling. He didn't know I was the guy who kept untying himself and trying to escape from neural intensive care precisely because I don't give up. I wasn't going to let forgetting three words make me believe there wasn't hope.
  He sent me to a neuropsychologist. A neuropsychologist isn't a shrink. They study behavior and do testing of the brain and thinking processes  to try to figure out what's going on without having to cut open the skull and peer at the gray matter.
   The neuropsychologist was in a town I lived in for ten years. The streets in that town are not laid out well. If you don't know the town, it's quite easy to get lost there. I was able to negotiate the streets as if I never left...and it had been ten years since my wife and I moved away. That was a confidence builder for me. I was convinced that he would find nothing wrong with me or my memory.
   The testing took 6 hours. He started with several hours worth of IQ tests. They try to determine pre-illness IQ and post-illness IQ. I really don't know which test was for what. He determined I had suffered no loss of IQ.
   He also determined that I have Korsakoff's. There are several tests they do to check your memory. Word lists, drawings, stories they have you repeat. Lots of little tests. It was frightening. The ones I failed, I failed completely. I have a visual memory. I can "see" things I want to remember. At some points during that day, the interior screen--the little film screen I can see when I try to remember things--went blank. Nothing. Zip and zero and nada.
   It was scary. It could have been depressing. I wouldn't let it be either of those things for long. I couldn't let it be either of those things for long.
  I remember taking my first swim test as a Boy Scout. I had to swim 100 yards. I was paddling along, struggling, but determined to make it, while a lifeguard walked alongside me on the dock. I heard him say, "He's not going to make it," to someone. I gave up when I heard him say that. I think, looking back on it, that he did me a real dis-service that day. Ever since, I promised myself I would never give up just because someone said something can't be done. Hmm... Maybe that kid on the dock did me a bigger favor than I thought.
  The neuropsychologist said, "You have Korsakoffs. Your memory will never get any better. As long as you don't start drinking again, it probably won't get any worse...but it will never get better." He recommended I carry a digital voice recorder and make notes for myself on it.
   I did that. It helps. But he was wrong about my memory not getting better. It's still not great, by the way. I do have Korsakoffs. He was wrong, though, when he said it wouldn't get better. Practice makes it better. I don't know how, from a neurology standpoint, my memory is better, but I do know that it is better. I still carry the recorder but I don't need it as much. I eat well, and I take my thiamin, and I don't drink.
   I guess if there's a moral to this entry it's this: don't give up.

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