CMSC Conference 2003
~ A Report on ~ The CMSC Conference in Denver, Colorado October 17 - 19, 2003
by Alan Wittenberg, MSW
I was fortunate to be able to attend a conference sponsored by the Consortium of MS Centers (CMSC) over the weekend of October 17th.Since there were 13 presentations made, I have had to narrow down this article to what I think readers would be most interested in - information that directly impacts your daily living with MS.
Edward Fox, MD, PhD, and member of the Antegren (now called Tysabri) clinical trials spoke about the Immunology and Pathology of MS. The bottom line is we still don't know what triggers the immune system and onset of MS. We do know what happens once it gets triggered - inflammation, demyelination and axonal damage. We also know that if we could prevent the white blood cells from breaking through the blood-brain barrier we could probably prevent MS, which is what Antegren may be able to do. He also mentioned the promising study that has so far shown the ability to predict MS through a blood test and how this will be a great breakthrough in terms of early treatment.
Craig Smith, MD new criteria for diagnosing MS (July 2000) being recommended by the International CMSC. It is called the McDonald criteria. It incorporates the usage of technological advances such as the various types of MRIs in order to more quickly diagnose MS in order for treatment to begin sooner. He cited the Dalton study of 2003 that followed neurologists for three years who used the McDonald criteria. It showed that MS was diagnosed two times as often within one year of the patient's first episode than those neurologists who didn't use the criteria.
Mariko Kita, MD, discussed the ABCR medications and some studies that are pitting one against the other, the impact of switching from one to the other as well as studies for combination therapy. Links to many of these studies can be found on our page. However, there is no completed data available at this point.
Allen Bowling MD, PhD, author of Alternative Medicine and Multiple Sclerosis, has also written several articles focused on Complementary and Alternative Medicine in general and diets and dietary supplements in specific. He emphasized how inconsistent, inaccurate and unknowledgeable the vast majority of authors, vendors, Internet sites, CAM practitioners and conventional healthcare providers are when it comes to CAM and MS. Dr. Bowling explained that the jury is still out on the effects diet has on MS. He did note that a Swank diet clinical trial did show positive results on the attack rate and disability but it didn't use a placebo group for comparison. He said that he doesn't recommend it instead of the ABCR medications and that the diet can cause a vitamin E deficiency, so supplements of 100-400 IU daily is recommended. He also mentioned that a study in England on the effects of marijuana on MS is almost completed and that a study on anti-oxidants is going on presently. For more information, Dr. Bowling's website is http://www.ms-cam.org.
Patricia Kennedy, RN, CNP, MSCN, discussed symptoms of MS; fatigue, cognition, spasticity, bowel, bladder, sex, and pain in terms of diagnosing, treatment/management, side effects and educating the patient. The title of her presentation was "Ramblings of an MS nurse: Managing those pesky problems we see every day." She provided a story to point out that medical people, like the rest of us, don't always notice the obvious or ask the right questions of the patient, thus causing less effectiveness and/or wasting time in resolving the problem. For example, we must be clear on what is causing the fatigue. Is it lack of sleep, medications, heat, depression, nutrition or MS? It is important to treat the underlying cause, teach the patient about different causes of fatigue and how to be proactive in preventing or coping with the fatigue. In terms of spasticity, she discussed some of the medications but centered on the Intrathecal Baclofen Pump and Botox. She noted the Rocky Mountain MS Center has a clinic specifically for patients with spasticity and it has found Botox injections have helped in terms of comfort level but not necessarily functional ability. She stated that before thinking that a bladder problem is MS related, it should be evaluated by a urologist who has MS experience. She mentioned a treatment called the oxytrol patch that reports have indicated fewer anticholinergic side effects and that it can help with providing a "steady state with fewer fluctuations" in flow. She discussed pain with MS and stated that it is estimated that 2/3 of people with MS will experience pain some time in their disease. She also stated, "Pain is what the person experiencing the pain says it is."
Rosalind Kalb, PhD, spoke on Emotional and Cognitive Changes: Impact on Adaptation and Treatment. Dr. Kalb is a clinical psychologist and discussed her long years of experience working with people with MS and their loved ones. She discussed helping people learn how to adapt to the ever-changing "uninvited guest" called MS. She discussed the grief work involved and most important, having the person identify their "MS-free zone, a place that can't be touched by the MS but where one can re-fuel to allow for on-going life adjustments. This free zone may be prayer, music, meditation, etc. She discussed when it is appropriate to have a neuropsychological evaluation done and some studies on treating various aspects of cognitive dysfunction.
Corey Ford MD, PhD, spoke about the role of MRI in diagnosing, managing and monitoring the progression of MS. He noted that 10-12% of MS patients show lesions in their spinal cord. He also pointed out that they are able to demonstrate through a brain MRI that an MS patient's brain will "recruit" other parts of the brain to help it perform different tasks as compared to a non-MS brain.
Brian Hutchinson, PT and current President of The Huega Center, discussed the importance and the role of physical, occupational and speech/language therapists. He emphasized the need for a good evaluation before purchasing durable medical equipment to make sure it fits properly and is appropriate for the individual. Also, it provides a baseline from which to compare months or years later. For more information on health promotion, go to http://www.huega.org.
Richard Hicks, PhD, discussed "A Wellness Approach to Managing MS". He noted that the two most common wellness interventions are exercise and stress management. He recommended reading "Health Promotion in MS" an article by Stuifbergen & Becker and published in Physical Medicine Rehabilitation Clin N Am 2001; 12:922.He also highly recommended reading "Exercise Makes Things Better" by Petajan, et al. Ann Neurol 1996; 39:432-441.He cautioned that before you start an exercise program, you should first consult with your doctor.
Alan Wittenberg is a counselor, social worker and the Program Coordinator for the Multiple Sclerosis Association of King County.
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