Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 MSFYi: March 2010 Issue We value your feedback! Email [1]editor@... with comments and suggestions. ____________________________________________________________________________ Editor's Note: The intent of this newsletter is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly. For questions regarding this publication, email [2]editor@.... For support services, email [3]support@... In This Issue * Study Implicates Epstein-Barr Virus in Development of MS * FDA Approves Botox to Treat Spasticity in Flexor Muscles of the Elbow, Wrist and Fingers * A Blood Test May Help Predict Drug Treatment Response * Giving Myelin-Making Cells a Boost * The Benefits of Sunlight: Beyond Vitamin D * Survey Gathers Information to Help Develop Doctors' Programs on MS Care * The Long Road to Ampyra * Website to Watch * Book Brings Understanding When Mom Has MS * Clinical Trial for MS Pain MSF News * MSF Cooling Program Gearing Up * Speak Up! Become a MSF Ambassador! * Where Did You " Shine with Sunny " ? Study Implicates Epstein-Barr Virus in Development of MS Epstein-Barr Virus (EBV) has long been suspected of playing a role in the development of MS, and now the results from one large-scale study implicate EBV as a contributory cause of MS. Researchers from the Harvard School of Public Health, Walter Army Institute of Research, and a team of collaborators have observed for the first time that the risk of developing MS increases substantially following infection with EBV. The study appears in an advance online edition of the journal ls of Neurology and will appear in a later print edition. Hundreds of thousands of individuals not infected with EBV were followed up for several years through repeated blood samples collections. Researchers were then able to determine the time when individuals developed an EBV infection and its relation to MS onset. " The recruitment of individuals before they were infected with EBV and following up with them for several years is the critical methodological aspect that makes this study qualitatively different from all previous work, " said Alberto Ascherio, senior author of the study and professor of epidemiology and nutrition at Harvard School of Public Health and professor of medicine at Harvard Medical School. EBV is a herpes virus and one of the most common human viruses worldwide. Infection in early childhood is common and usually asymptomatic. Late age at infection, however, often causes infectious mononucleosis. In the U.S., upwards of 95 percent of adults are infected with the virus, but free of symptoms. EBV has been associated with some types of cancer and can cause serious complications when the immune system is suppressed, for example, in transplant recipients. There is no effective treatment for EBV. This is the first study based on the longitudinal follow-up of several thousand individuals who were not infected with EBV at the time of recruitment. The study population was made up of active-duty US Army, Navy, and Marines personnel who have at least one blood sample in the Department of Defense Serum Repository. The electronic databases of the Physical Disability Agencies of the US Army and Navy were then searched for individuals whose records indicated a possible diagnosis of MS reported between 1992 and 2004. The researchers selected 305 individuals diagnosed with MS and who had blood specimens collected before the date of their diagnosis. Two controls for each case were then selected from the serum database and matched by branch of service, sex, date of blood collection, and age at time of blood collection. The study found that MS risk is extremely low among individuals not infected with EBV, but it increases sharply in the same individuals following EBV infection. " The observation that MS occurred only after EBV is a big step forward, " said Alberto Ascherio. " Until now we knew that virtually all MS patients are infected with EBV, but we could not exclude two non-causal explanations for this finding: that EBV infection is a consequence rather than a cause of MS, and that individuals who are EBV negative could be genetically resistant to MS. Both of these explanations are inconsistent with the present findings, " said Ascherio. The study was supported by a grant from the National Institute of Neurological Disorders and Stroke. [go to top] FDA Approves Botox to Treat Spasticity in Flexor Muscles of the Elbow, Wrist and Fingers The U.S. Food and Drug Administration (FDA) has approved Botox (onabotulinumtoxin A) to treat spasticity in the flexor muscles of the elbow, wrist, and fingers in adults. A common symptom of MS which can appear in all extremities, spasticity has in the past been treated with Botox " off-label. " While " off label " use of properly prescribed medications is legal, insurance companies typically deny claims relating to medications prescribed for " off label " use. Botox prescribed to treat spasticity in these particular upper extremities will no longer be considered " off label. " " Muscles affected by spasticity have increased stiffness and tightness, which may lead to pain, difficulties with hygiene, and other activities of daily living, and may affect how a patient looks, " said Katz, M.D., director of the Division of Neurology Products in the FDA's Center for Drug Evaluation and Research. " In clinical trials, treatment with Botox was found to be beneficial to patients with upper limb spasticity. " Botox works by temporarily blocking the connections between nerves and muscles, resulting in a temporary paralysis of the spastic muscle. Botox has a " boxed warning " that says the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening. The most common adverse reactions reported by patients with upper limb spasticity were nausea, fatigue, bronchitis, muscle weakness, and pain in the arms. Botox has not been shown to be safe and effective treatment for other upper limb muscles, spasticity in the legs, or for treatment of fixed contracture - a condition that affects range of motion.Treatment with Botox is not intended to substitute for physical therapy or other rehabilitative care. [go to top] A Blood Test May Help Predict Drug Treatment Response Research from Stanford University published recently in Nature Medicine suggests it may become possible to identify which people with MS will respond to beta-interferon treatment and who is not likely to benefit. The researchers found two distinct chemical pathways through which the body's inflammatory immune-system response triggers MS. One pathway corresponded to people who responded to beta-interferon, the other to people who didn't. The research was conducted first in mice, and then verified in analysis of blood samples of 26 people with MS. Led by Lawrence Steinman and C. Axtell of Stanford's neurology department, the researchers concluded that a simple blood test could indicate which people were most likely to benefit from beta-interferon, which minimizes the relapses suffered by some people with MS. Differentiating between responders and nonresponders to beta-interferon could help thousands of people make decisions regarding drug treatment. The three beta-interferon medications currently FDA approved for relapsing-remitting MS are Betaseron?, Avonex?, and Rebif?. The drugs can cause flu-like symptoms such as aches, fever and muscle pain that can last for hours. The side effects often discourage people from taking the medicine as prescribed. Most people with MS are of the " relapsing-remitting " type, where the disease flares and subsides intermittently without warning. Beta-interferon, an injectable medicine that costs about $25,000 and up annually, lowers the relapse rate by roughly one-third in the half of the people who respond. Stanford has filed a patent application for a blood test that would distinguish between responders and nonresponders, but the university has noted that researchers wouldn't benefit financially. A blood test must first be submitted to the Food and Drug Administration for approval, a process that is still a year or two away. [go to top] Giving Myelin-Making Cells a Boost A molecular master switch that catalyzes cells' transition to mature, myelin-making mavens has been identified by scientists at the Stanford University School of Medicine. The results may have implications for restoring myelin damage resulting from MS. About four out of every 10 cells in the brain are oligodendrocytes. These cells produce the all-important myelin that coats nerve tracts, ensuring fast, energy-efficient transmission of nerve impulses. Mixed among them are proliferating but not particularly proficient precursor cells that are destined to become oligodendrocytes when needed but, until then, remain suspended in an immature, relatively undifferentiated state somewhere between stem cell and adult oligodendrocyte. Investigators discovered that a molecule known as miR-219 is found at high levels only in oligodendrocytes, and that it is both necessary and sufficient to induce their relatively undifferentiated precursors to become functioning adult cells. " The mechanism responsible for this shifting of anatomical and behavioral gears from precursor to fully functioning oligodendrocyte was a mystery, " said Ben Barres, MD, PhD, professor and chair of neurobiology and the study's senior author. " Finding this switch has allowed us to ferret out several of the molecules it acts on inside cells. And that in turn could open the door to new approaches to treating diseases where oligodendrocyte precursors' failure to mature appropriately plays a role. " [go to top] The Benefits of Sunlight: Beyond Vitamin D For more than 30 years, scientists have known that multiple sclerosis (MS) is much more common in higher latitudes than in the tropics. Because sunlight is more abundant near the equator, many researchers have wondered if the high levels of vitamin D provided by sunlight could explain this unusual pattern of prevalence. A recent study at University of Wisconsin-Madison suggests that ultra-violet (UV) light may play a greater role than vitamin D in discouraging as well as controlling MS. " Since the 1970s, a lot of people have believed that sunlight worked through vitamin D to reduce MS, " says DeLuca, Steenbock research professor of biochemistry at University of Wisconsin-Madison. " It's true that large doses of the active form of vitamin D can block the disease in the animal model. That causes an unacceptably high level of calcium in the blood, but we know that people at the equator don't have this high blood calcium, even though they have a low incidence of MS. So it seems that something other than vitamin D could explain this geographic relationship. " Using mice that are genetically susceptible to MS-like disease, the researchers triggered the disease by injecting a protein from nerve fibers. The researchers then exposed the mice to moderate levels of UV radiation for a week. After they initiated disease by injecting the protein, they irradiated the mice every second or third day. The UV exposure (equivalent to two hours of direct summer sun) did not change how many mice got the MS-like disease, but it did reduce the symptoms of MS, especially in the animals that were treated with UV every other day, DeLuca says. The research group also found that although the UV exposure did increase the level of vitamin D, that effect, by itself, could not explain the reduced MS symptoms. In some situations, radiation does reduce immune reactions, but it's not clear what role that might play in the current study. " We are looking to identify what compounds are produced in the skin that might play a role, but we honestly don't know what is going on, " DeLuca says. " Somehow it makes the animal either tolerate what's going on, or have some reactive mechanism that blocks the autoimmune damage. " DeLuca stresses that the study, however hopeful, may or may not lead to a new mode of treatment. " There are several ways this could go. If we can find out what the UV is producing, maybe we could give that as a medicine. In the short term, if we can define a specific wavelength of light that is active, and it does not overlap with the wavelengths that cause cancer, we could expose patients who have been diagnosed with MS to that wavelength. " [go to top] Survey Gathers Information to Help Develop Doctors' Programs on MS Care A company that designs and creates educational programs to help doctors better treat their patients is looking for people with MS to participate in a survey. DKBMed, a non-accredited continuing education company, is working with the s Hopkins School of Medicine to develop new programs in multiple sclerosis. The main goal is to identify practice gaps in physicians' treatment of patients with MS, and develop educational programs to close these gaps. This short survey focuses on your own knowledge of MS and how you feel about the neurologist that treats you, or your loved one. Your responses to this survey are completely anonymous. No personal information and no email addresses are collected by this system. To participate in the survey go to: [4]http://www.surveymonkey.com/s/LDX8KPZ. [go to top] The Long Road to Ampyra The journey from developing a new drug to treat MS symptoms to actually seeing it being prescribed can be a long one, but one man behind the newly-approved drug Ampyra? says persistence has had its rewards. It was 47 years ago when medical researcher Floyd seized on the idea that cool temperatures improved MS patients' mobility. With his partner, Dusan Stefoski, spent decades -- mostly at Chicago's Rush University Medical Center -- pushing for the development of the new drug despite a shoestring budget and critics advising them to give up. ' story was recently described in an article in The Chicago Tribune. The long journey included lobbying U.S. regulators to approve a promising chemical compound used by doctors in Bulgaria, neural tests on lobsters and keeping research frogs in his shower stall while he was in the Army in the 1960s, according to the article. " If I had to go next week, I would die a happy man, " is quoted as saying. He is now 75 and retired in California. " I always thought it was going to come through, but I was beginning to wonder if I was going to be here when it finally did. " As a neurology resident at New York's Mount Sinai Hospital in 1963, watched a MS patient placed into a hot bath and emerge " limping and unable to see out of one eye. " He observed how even a small rise in the body temperature of a patient caused deterioration in leg strength, walking and eyesight while cooling a patient's temperature improved their symptoms. " The one thing about science is that, if what you are doing is correct, that is the important thing and it will eventually succeed, no matter what the politics or whatever else might get in the way, " told the Tribune. " When I started this, I decided I would continue until something didn't work out, but everything did work out, each step of the way. ... I wanted to invent something that would help MS sufferers live better lives. It made it worthwhile to spend all those years working. " [go to top] Website to Watch The website thisisms.com is described as " an unbiased, unaffiliated site dedicated to eradicating multiple sclerosis. We offer an open-minded approach to all potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone? to alternative treatments such as low dose naltrexone. " In addition to MS news, the site hosts an array of forums dealing with many different MS-related topics such as the various disease-modifying drugs and how to improve quality of life with MS. One new forum topic that has acquired a large following recently is the one about chronic cerebro-spinal venous insufficiency (CCSVI). People who have had the " liberation treatment " to relieve the vascular abnormalities associated with CCSVI have been posting their progress on the forum. [go to top] Book Brings Understanding When Mom Has MS Mom's Story; A Child Learns About MS (Chalet Publishers, Fountain Hills, AZ) tells the story of a young girl, Amy, who sees her mother with some frightening health problems, learns that her mother has MS and then understands that she will not die from it. Written for children, this fictional story touches on many of the emotional reactions a child experiences when learning a parent has a chronic illness. In the beginning, Amy fears the worst but as she learns more about MS her fears are dispelled. Readers of all ages will gain an understanding of MS, who gets it and how the disease is diagnosed. In addition, the 74-page book includes a glossary of MS terms along with a list of information resources for families coping with MS. The books author, Jo Nickum, has had MS for 30 years. A magazine editor and freelance writer, she lives in Fountain Hills, Ariz. with her husband and has two grown sons. The book is available on amazon.com, barnesandnoble.com and the website [5]www.marynickum.com. [go to top] Clinical Trial for MS Pain A study of " Duloxetine for Multiple Sclerosis Pain " is recruiting participants at sites throughout the country. This study is designed to primarily assess the efficacy and safety of duloxetine 60-120 mg once daily (QD) compared with placebo on the reduction of pain severity in patients with central neuropathic pain due to MS. Inclusion Criteria: * Must be 18 or over, male or female * Have central neuropathic pain due to MS based on the disease diagnostic criteria * Have a score of 4 or greater on the daily 24-hour average pain score * Females must test negative for pregnancy at study entry * Complete the daily diaries for at least 70 percent of the days of the study Patients may continue other prescription and nonprescription analgesic pain medications as long as the dose has been stable for one month prior to study entry, and they agree to maintain that stable dose throughout the study Disease Diagnostic Criteria: * Diagnosis of MS at least one year prior to study entry * No MS flares or change in disease treatment for the three months prior to study entry * Daily pain due to MS for a minimum of three months prior to study entry Exclusion Criteria: * Are currently in a clinical trial of MS disease-modifying therapy * Have pain that cannot be clearly differentiated from causes other than MS * Any current or historical diagnosis of mania, bipolar disorder, psychosis, or schizoaffective disorder * History of substance abuse or dependence * Are pregnant or breast-feeding Learn more at [6]www.clinicaltrials.gov and refer to identifier: NCT00755807. [go to top] MSF News MSF Cooling Program Gearing Up Applications are now being accepted for the MSF's 2010 Cooling Program. A variety of free cooling accessories are offered, including bandanas, neckties, hats, wristbands, and two types of cooling vests. Use these items during the hot summer months to prevent overheating, which can lead to weakness, fatigue, visual disturbances, and the exacerbation of other symptoms. While the heat does not cause your MS to worsen, it can alter the passage of nerve impulses and slow you down. All applications are confidential and will be reviewed by the grant committee. Applications can be submitted online or completed applications can be mailed to Multiple Sclerosis Foundation Cooling Program, 6350 North s Ave., Fort Lauderdale, FL 33309. To find the application, go to [7]www.msfocus.org, " Programs and Activities " and then click on " Cooling Program. " [go to top] Speak Up! Become a MSF Ambassador! Too often, MS symptoms are left in the shadows. People don't see your fatigue and depression and can't feel your pain. They say you look good but have no idea what's going on inside. It's time to speak up for yourself and others with MS! This spring, the MSF will choose ten people with MS from around the country to serve as ambassadors. These people will become leaders in the MS community by: * Attending local and regional MSF events * Speaking at support groups and health fairs * Participating in public outreach Those selected will have the chance to participate in leadership training to help them become advocates for MS awareness, and work closely with the MSF to help meet their advocacy goals. So, tell us how you would get the word out! Be creative - write an essay, record a video, include photos, or do a slideshow presentation. See full guidelines and application at [8]http://www.msfocus.org/pdf/AmbassadorApp.pdf or in the current issue of MSFocus. [go to top] Where Did You " Shine with Sunny " ? The MSF called you to action with our " Shine with Sunny " initiative for National Multiple Sclerosis Education and Awareness Month. Now that the month has ended we can't wait to see where you and Sunny ventured in your quest to get out of the comfort zone. Send a photograph of yourself with Sunny, along with a short essay explaining what you did and how that took you outside your comfort zone. The MSF will choose 50 winning entries to receive T-shirts commemorating 2010 NMSEAM. Some will also be chosen to feature in MSFocus, the Foundation's quarterly magazine. Submissions can be emailed to [9]awareness@... or mailed to " Shine with Sunny " , Multiple Sclerosis Foundation, 6350 N. s Ave., Ft. Lauderdale, FL 33309. [go to top] References 1. mailto:editor@... 2. mailto:editor@... 3. mailto:support@... 4. http://www.surveymonkey.com/s/LDX8KPZ 5. http://www.marynickum.com/ 6. http://www.clinicaltrials.gov/ 7. http://www.msfocus.org/ 8. http://www.msfocus.org/pdf/AmbassadorApp.pdf 9. mailto:awareness@... This message was sent by: Kasey Minnis, 6350 N. s Avenue, Fort Lauderdale, FL 33309 Email Marketing by iContact: http://freetrial.icontact.com Manage your subscription: http://app.icontact.com/icp/mmail-mprofile.pl?r=22211148 & l=38660 & s=EBTX & m=364779\ & c=263560 Forward this message: http://app.icontact.com/icp/core/message/forward?m=364779 & s=22211148 & c=EBTX & cid=\ 263560 Quote Link to comment Share on other sites More sharing options...
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