Imagine waking up each and every morning with unbearable pain throughout your entire body. Simple tasks such as brushing your teeth and getting yourself dressed are agonizingly difficult to perform. Even worse, imagine your fingers and thumbs slowly wasting away in an illness no doctor seems able to identify. Some of us might take good health for granted but Traverse City resident Scott Kowalske knows all too well how treasured it can be, and has withstood a living nightmare for over five years.
THE ONSET As owner of a roofing company, 42-year-old Scott Kowalske fell victim to a puzzling medical condition in early 2001. While walking through a theme park in Orlando, Florida, he began to lose strength in both of his legs and his feet began to drag. Being a diabetic, his first thought was that the dysfunction in his lower extremities was associated with his illness. He flew home to Michigan and made an appointment with his physician. Numerous tests were performed over a period of time, and he was told that diabetes was not necessarily a contributing factor, and it would be essential to see a specialist. Within weeks, other symptoms began to surface, such as tingling sensations, numbness in his feet, and soreness in his hands. Additional expertise was required, and Scott spent the next few months being examined by several neurologists. Multiple sclerosis and Lou Gehrig’s disease were mentioned, and the process of elimination had begun. Virtually thousands of medical ailments exist today, and it can be quite a challenge for medical professionals to make an immediate clinical diagnosis. Some disorders need to demonstrate a “dissemination in time” to confirm a specific disease. With too many unanswered questions and conditions worsening, Scott tried to arrange a visit at the University of Michigan to see a disease specialist. By late June, he lost his balance completely and his health steadily deteriorated, which made it impossible to work. In early July he was walking with a cane, and by September he arrived at the University of Michigan on crutches.
DIAGNOSIS Upon further testing and examination at U-M and careful review of Scott’s medical records, he was diagnosed with severe myopathy. Myopathies are neuromuscular disorders in which the primary symptom is muscle weakness due to dysfunction of muscle fiber. The doctors assured him that with six months of physical therapy and immunosuppressive drug therapy, he should be fine. Unable to maintain his business, Kowalske eventually moved into his parents’ house and scheduled his therapy. On his first day of therapy, he consulted with a neurologist in Traverse City. Shockingly, he was told that he had been misdiagnosed by the physicians at U-M and that he did not suffer from any form of myopathy. His diabetes was noted as a potential cause, and his neurologist suggested that he make a trip to Mayo Clinic.
AT THE MAYO CLINIC Kowalske was examined at Mayo Clinic in Minnesota, and from there they sent him to Mayo Clinic in Jacksonville, Florida for five days of highly scrutinized testing with several physicians. The doctors found evidence of a condition known as severe peripheral neuropathy, but it was not known what was causing it. Peripheral neuropathy describes damage to the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body. Statistically, more than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Unfortunately, no medical treatments exist that can cure inherited peripheral neuropathy. Occasionally the neuropathy is a symptom of another disorder, such as diabetes, lupus, rheumatoid arthritis, or certain vitamin deficiencies, to name a few. The next step was to have a nerve biopsy done at U-M. A doctor from Johns Hopkins University assured Kowalske that he was determined to give him some answers. Once they opened his wrist during the biopsy, four different physicians were called into the procedure room. With a concerned look on his face, Kowalske asked what the problem was. He was told that there was 80 years of medical experience before him and they had never seen such an abnormal nerve. The pathology report on the biopsy confirmed rare nerve degeneration. Still no prognosis, still no concrete answers.
MYSTERY CONTINUES As Kowalske grew painfully frustrated with his condition, the journey over the next several months led him from Las Vegas to Scottsdale, Arizona, to The Scripps Research Institute in California as well as a Los Angeles diagnostic center. During this time the medical bills continued to pile up as his fingers and thumbs slowly began to waste away. The tips of each finger and both of his thumbs disintegrated right down to the first joint. The pain was beyond comprehension and he completely lost sensation in both legs from the knee down. Barely able to get around on crutches, he did his best to pull himself together and continued to put up a spirited fight for his life.
ALTERNATIVE CLUES In late 2003, a phone call came in from a Los Angeles physician who had done an extensive analysis of Kowalske. This highly-touted physician uses methods of testing that are not used in standard medicine. His findings are described as hypotheses which could merit further investigation, based on his reputation and experience. The first question presented to Kowalske was whether or not he ate venison. As an avid hunter, Scott had eaten venison for several years: not just in Michigan, but several other states throughout the country. Based on Kowalske’s medical history and extended tests, it was suggested that he had a chronic wasting disease from consuming tainted venison. Chronic wasting disease is a progressive, fatal, degenerative disease affecting elk, mule deer, and white-tailed deer. There are no confirmed cases of transmission to humans, but as the mad cow outbreak in recent history killed over 150 people, there is evidence to suggest that similar types of disease can be transmitted to humans. Mad cow disease involves the presence of prions, or proteinaceous infectious particles. According to the reports from the L.A. physician, rogue prions were discovered in Kowalske’s system, and until someone is willing to prove otherwise, how can it be challenged?
PRIONS (pree-ons): The term prion was coined in 1981 by Dr. Stanley Prusiner to identify the agents that cause a novel type of fatal brain diseases. Bovine spongiform encephalopathy (BSE or mad cow disease), sheep scrapie, and Creutzfeldt-Jakob disease (CJD) of humans are examples of prion diseases. The discovery of prions has shaken the confidence of scientists, making them question whether they truly understand the ground rules. Prions cause diseases, but they aren’t viruses or bacteria or fungi or parasites. They are simply proteins, and proteins were never thought to be infectious on their own. Organisms are infectious, proteins are not. Or, at least, they never used to be (National Institute of Health).
CASE STUDIES: In the late 1990s, three hunters from Minnesota and Wisconsin died of a rare brain wasting disease. The men, all friends, regularly ate wild game, including venison and elk. They all died relatively young and there is some concern that this is not merely a statistical fluke. Researchers continue to state that they still don’t know if the deer disease can cross over to humans. The wait-and-see approach is unacceptable from a public health point of view. Understandably, there would be huge implications if in fact chronic wasting disease was transmittable. During the mad cow scare the beef industry took an enormous hit financially, and you can bet the multi-million dollar hunting industry does not want to suffer the same consequences. Kowalske’s complete health records have been reviewed by several medical experts across the country and very few are willing to openly discuss the findings, due to political ramifications.
PAIN MANAGEMENT Enduring this unknown disease has obviously been a horrific experience for Scott Kowalske. He has been to 15 different pain clinics throughout the years, and is currently taking 1,950 milligrams of Darvon each morning in order to pull himself out of bed. Along with an excessively high dose of Darvon, which most of us would clearly overdose on, he is taking 1,200 micrograms, four times a day, of a drug called Actiq. This particular drug is a stage four cancer medication and gives him relief. To complicate matters, his Medicaid insurance recently denied coverage on Actiq because Kowalske does not have a proven form of cancer. He had to soak his hands in buckets of ice because of the severe pain, and his body broke down and became weakened from the stress. Because of this, he ended up in the hospital for five days. An urgent call was placed to the governor’s office and they declined to get involved because it was too political. Several more calls were initiated to government agencies and, with the help of a state senator, Kowalske was finally able to have his prescription reinstated temporarily. MOVING ON Through continued perseverance, Kowalske became privy to an I.V. therapy from Europe that was quite effective on victims of Creutzfeldt-Jacob disease, the human variant of mad cow. This experimental treatment is not covered by insurance and it is not recognized by the F.D.A. At $6,000 per infusion, he managed to have four or five treatments done whenever he could raise the necessary funds. The procedure was administered in San Diego, and miraculously his health improved, and it strengthened his mobility. The stiffness in his hands subsided, and Kowalske regained partial use of muscle function. Unfortunately, the recommended length of this procedure included a nine day infusion once a month for 12 consecutive months. With his savings tapped out and his parents already into a second mortgage on their house, it was just not possible financially to continue the treatment. Since the IV therapy was only thought to slow the progression of his affliction, it was recommended by a San Diego physician that Kowalske consider a stem cell transplant as a conceivable cure. Stem cell technology is not only controversial, but it is in the early stages of development. This emerging field of regenerative medicine has the potential to revolutionize medicine by being able to produce human cells of any kind for use in a wide-array of injuries and diseases. Federal funding is limited for stem cell research, but it is being performed in other countries with exceptional results.
CONCLUSION Having visited over 30 specialists in the past five years and exhausting all financial resources, Scott Kowalske is in dire need of monetary support. The most frightening aspect of this illness for Scott is the ambiguity of the origin, and the uncertainty of his impending survival. His health is diminishing so rapidly that the only potential life-saving option is to have the stem cell transplant at a cost of $35,000. A benefit is being planned and assistance is welcome via e-mail: SKBfund@aolcom
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