Good morning everyone! If you can, please help this person named David. Thanks. I am sending this plea to you for my son, David, because he is incapable of asking himself. I thank you for reading this and pray that someone out there has seen an illness like David's or may have some ideas you can share with us. This is my son's story. My name is David and I am 31 years old. At the beginning of 1998, I was a happy, energetic young man with a wife and son, a good job and had never been seriously ill in my life. At the beginning of the summer of '98, I began to feel very tired all the time. It was really all I could do to drag myself to work and when I got home, all I wanted to do was lie on the couch. I developed insomnia. I began to lose interest in my job or most of anything else. I began having respiratory problems and panic attacks. I became very claustrophobic and developed a fear of water. My eyes began bothering me and were red and watered all the time. I began to experience blurred vision. I became disoriented at times and was unable to differentiate between reality and non-reality. I began forgetting how to do things on my job that I had been doing very well. I became easily agitated and irritable. The only thing I could think of to describe how I was feeling was to say "I just feel weird." My primary care physician seemed to think I was suffering from depression and sent me to a psychiatrist in Wichita Fall, Texas who started me on a series of antidepressants. I did not feel I was depressed, as I had nothing to be depressed about. My speech started to slur and it was attributed to a side effect of the medication and the medication was changed. When I began stumbling and losing my ability to walk, it became apparent that I was suffering a physical and not a mental problem. I was referred to the Zale-Lipshy Hospital in Dallas, Texas where I spent a week while they ran various tests. I was tentatively diagnosed with Stiffman Syndrome and was started on large doses of Valium. It did not work and that diagnosis was determined incorrect. At this point, I was still able to walk some by using a cane but gradually my condition worsened and I was unable to stay awake. I spent many days sleeping as much as 20 hours out of 24. The question came up concerning Chronic Tetanus as I was showing many or these symptoms and I had suffered a severe hand injury which required surgery and placing a wire in my hand. I also had a plaster cast over the open wound for several weeks. I was treated with penicillin injections and a tetanus booster and probably showed more improvement in that period of time than at any other during my illness. I drove my car for the first time since I became ill and was feeling much better, but it did not last. I was referred to a physician in Wichita Falls who specializes in rare diseases and I was diagnosed with Central nervous System Lupus and was started on large doses of Prednisone. The sleeping continued. The speech was so slurred at this point that it was almost impossible for anyone to understand what I was saying. I was now in a wheelchair and had begun to be incontinent of urine at night. I was admitted to the North Texas Regional Health Care Center in Wichita Falls, Texas in June of 1999 where I stayed a month. More tests were taken and other consultants called in. They disagreed on the Lupus diagnosis and decided I had an autoimmune disorder from unknown etiology. They had ruled out the obvious diseases and were basically down to "I just don't know." I was given plasma pheresis and was ordered IV/IG monthly, which I am still receiving. They also did a brain biopsy in the hospital, which showed nothing except some atrophy which was unusual for someone my age. The most current theory seems to be that I had suffered a virus at some time and only time would tell if I regained any of my normal functions. At the beginning of my illness, I weighed about 190 pounds, which is pretty hefty for someone who is 5'8" tall. I now weigh 126 pounds. My current situation is: I am slowly deteriorating. I am unable to stay awake. I cannot hold my eyes open when I am awake. I remember people I knew years ago but couldn't tell you what I ate for breakfast. I cannot talk above a whisper and then you would not be able to understand me. I cannot walk. I no longer have a wife as she left and took my son. I cannot tell you when I need to go to the bathroom. I NEED YOUR HELP. If you know anyone who has had a similar illness or have any ideas, please email to savingdavid@yahoo.com, swtstcy22@yahoo.com, or lucille@chipshot.net Thank you, David >>
Oxygen, Sounds like you have a great idea and I will do the same. Maybe some others here can too. This looks like a cry for help from the public in general. If you feel you need persmission there are three e-mail addresses listed. Thanks. [This message has been edited by Christian (edited January 16, 2000).]
I am familiar with these symptoms as my son's best friend and his brother died from a rare demyelinating disease called "adrenoleukodystrophy" or "ADL" for short. Although carried by a female, it is a rare genetic disease which affects males only. The "usual" onset is between the ages of 5 and 12 years old. However, there is an adult-onset version called "adrenomyelonueropathy" or "AMN" for short. It is possible that this is what Dave has. I have sent information via the e-mail addresses listed in the original post. It sounds like Dave's case is too far advanced for a diagnosis to help him. However, if it is an adult-onset of "ADL" it is most important for his son that it be diagnosed and that his son be screened for the gene. If it is present in his son, there is therapy which could be administered now to help thwart off the symptoms, although not entirely, to help him live a more normal life. If I hear back from the family, I will let you know. In the meantime, good idea and good luck with getting the story published! I might try the same thing. Let me know how it goes! Please Register or Log in to view the hidden image!
I'm curious, Christian. Before I ship this off to Stanford University, where did you get the call from? Is this someone you know personally?
