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| | | |  |  | Significant Barriers Prevent People with MS from Fully Committing to Treatment Regimen, New Survey Reveals | | Nearly all people (97 percent) with multiple sclerosis (MS) who have started treatment say their commitment to managing their disease in every way possible is their prime motivation for staying on therapy, according to a new North American survey of people with MS, results of which were released today at the Consortium of Multiple Sclerosis Centers annual meeting in Denver. However, the survey also found that people with the disease can face significant barriers that make it difficult for them to start or stay fully committed to an effective treatment regimen.(1)
The survey, which interviewed 220 people in the United States and Canada who have been diagnosed with MS in the past five years, uncovered a number of barriers patients face to starting and staying on medication, including the affordability of prescription medicine, injection-related issues and side effects, and the difficulty of maintaining a medication schedule.(1)
"Studies have shown that starting effective therapy soon after a diagnosis of MS and continuing that therapy on a consistent basis may significantly slow the progression of the disease.(2) This survey underscores the fact that despite their best intentions, many people with MS need help overcoming challenges that keep them from fully committing to treatment," said Amy Perrin Ross, APRN, MSN, CNRN, MSCN, president of the International Organization of MS Nurses. "The good news is there are several things that can be done to help give patients the best chance of starting and staying on therapy, including exploring financial assistance programs, forming lasting partnerships with an MS nurse and other supporters and choosing an effective MS medication that addresses a patient's personal hurdles. This can mean looking at attributes of a medication such as proven efficacy and safety, storage requirements, and the availability of support programs and financial assistance." |
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 | | When to tell Your Employer that You have Multiple Sclerosis | | Shabi Guptha
December 9, 2007
Deciding when to tell your employer of your MS diagnosis is easily as important as deciding when to tell your family. Under ADA rules you do not have to disclose an illness unless it causes a significant challenge in the workplace, or if you are requesting accommodations such as specific equipment or altered work times.
However, multiple sclerosis is unpredictable and while you may be fine today, it is possible for a new symptom to start while you're at work. The best time to inform your employer of the diagnosis may be when you are symptom-free. Arm yourself with information about your illness so that you can reassure your employer and provide needed information. |
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 | | Oral Treatment for MS? | | Teva and Active Biotech to Initiate Pivotal Phase III Trial Program of Oral Laquinimod for Relapsing Multiple Sclerosis
JERUSALEM & LUND, Sweden--(BUSINESS WIRE)--Teva Pharmaceutical Industries Ltd. (NASDAQ: TEVA) and Active Biotech AB (OMX NORDIC: ACTI) today announced that the companies are initiating a clinical Phase III program for laquinimod, a novel once-daily, orally administered immunomodulatory compound for the treatment of relapsing multiple sclerosis (RMS). The studies will now begin following the successful conclusion of a second phase II study and the outcome of discussions with the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMEA).
The companies are to commence two global Phase III trials of laquinimod during this year. The Phase III trials will take place in centers in the United States, Europe, and other locations worldwide, to further confirm the results of the Phase II trials. |
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 | | Society-Funded Researchers Find Cells that May Promote Myelin Repair in MS | | Researchers funded in part by the National MS Society’s Promise:2010 campaign report on a potential source of cells in the brain to promote repair of nervous system damage that occurs in multiple sclerosis. Anne Baron-Van Evercooren PhD, and Brahim Nait-Oumesmar PhD (INSERM, Paris) and colleagues report their findings in the Proceedings of the National Academy of Sciences (2007 Mar 13;104[11]:4694-9). Drs. Van-Evercooren and Nait-Oumesmar are members of one of the four international, multidisciplinary teams funded through the Promise:2010 campaign’s Repair and Protection Initiative to accelerate nerve tissue repair from basic research to human clinical trials.
Multiple sclerosis occurs when the immune system mistakenly attacks the myelin insulation of nerve fibers. Nerve fibers themselves also are damaged. Some spontaneous repair occurs via populations of immature stem cells resident in the brain, but this repair is not sufficient. Researchers are searching for ways to stimulate these natural repair resources in people with MS. Drs. Van-Evercooren and Nait-Oumesmar are members of the repair team headed by Professor Charles ffrench-Constant (University of Cambridge, UK), which is focusing on restoring myelin by identifying and amplifying natural repair factors in the brain and by attempting transplantation of replacement cells. |
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 | | Neurological disease common, survey finds | | WASHINGTON (Reuters) - Multiple sclerosis, Parkinson’s disease and other neurological diseases may be far more common than most people believe, according to new estimates published on Monday.
Nearly 1 out of 1,000 Americans has multiple sclerosis (MS) and 10 out of 1,000 elderly Americans has Parkinson’s disease, the survey found.
"Our estimate of MS prevalence is about 50 percent higher than a comprehensive review from 1982," said Dr. Deborah Hirtz of the National Institute of Neurological Disorders and Stroke, who led the survey.
It is not clear whether the disease is actually more common or if it is being diagnosed more accurately, she said.
Dr. Hirtz and colleagues reviewed studies from nearly 500 medical papers published between 1990 and 2005 for their report. The survey, published in Neurology, also found the rate of Alzheimer’s disease was up substantially from past estimates, with 67 out of 1,000 Americans over the age of 65 affected. Four out of every 100,000 has amyotrophic lateral sclerosis (ALS), the survey found. |
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 | | We need your help, now. | | Sign the Petition to Cure MS!
Petition Drive to Increase Federal Funding for MS Research
Dear National MS Society Members,
The National Multiple Sclerosis Society has officially launched an exciting and ambitious petition drive to increase federal funding for MS medical research. The goal is to obtain more than 200,000 signatures in support of the MS movement before February 12, 2007.
All of us know the budget scenario in Washington — many organizations and interests must compete for the same pot of funding. Additionally, the National Institutes of Health (NIH), the major source of funding for MS research, is scheduled to reduce funding by two million dollars in the MS arena over the next two years. We cannot accept this trend and must take action now.
We will deliver our petitions to legislators on Capitol Hill during the Society’s 2007 Public Policy Conference in March. The signatures of so many constituents will be used to strengthen our call for increased federal funding for MS medical research.
Click here to sign today. Then forward this e-mail to your friends, family, and others who support our efforts to end the devastating effects of MS. When signing online, select the Central New England Chapter in the drop down box, so our chapter receives credit. Tell your out-of-state friends and family to select our chapter as well! * Please note all information will only be used for the petition and not sold to other companies or used for other purposes*
To download hard copies of the petition, visit wwwmsnewengland.org, and select advocacy. Print the petition and post the hard copies at your church, YMCA, or other community gathering places. Return all copies of the petition to the Central New Chapter (see address below) no later then February 1, 2006. If you have any questions please contact Shannon Quirk at 781-693-5154.
Thank you for being an MS activist!
Shannon Quirk, MSW
Advocacy Coordinator
101A First Avenue, Su |
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 | | Physical Activity: Move It or Lose It | | We know the benefits of physical exercise: strength, stamina, and weight control.
Exercise may also have a protective effect against certain cancers and stroke, and reduces the risk of heart disease and diabetes.
But what does this all mean to a person who is constantly told to rest and not overdo it? What does this mean to a person with MS?
The first thing we need to do is change our perception of exercise. Exercise does not have to be harsh, sweaty workouts. In fact, the less pain the more gain, because you are more likely to stick with activities that feel good.
In MS, demanding activity can do more harm than good. Moderate exercise for 20 minutes or so every day yields the same benefits as intense sweat-and-grunt workouts.
Start by talking with your health care provider about the types of exercise most likely to be good for you. What is "good" exercise for one person may not be good for another. Like medication, exercise should be prescribed by a rofessional who knows how to develop individually designed exercises.
On the right track to fitness
Even a little exercise provides benefits. If you find you can't do what you used to do, don't give up. You can always modify or turn to another type of activity. Physical therapists and fitness instructors can provide expert help. With some changes, people with all types of MS can enjoy the benefits of exercise. |
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 | | FDA approves Tysabri | | The U.S. Food and Drug Administration has approved the return to market of TysabriŽ (natalizumab), produced by Biogen Idec and Elan Pharmaceuticals, to delay the accumulation of physical disability and reduce the frequency of relapses in those with relapsing multiple sclerosis (MS). The approval is based on positive results from two clinical trials showing that Tysabri significantly reduced the risk of sustained progression of disability and the rate of clinical relapse in those with relapsing MS.
The approval hinges on a mandatory registration program for patients and prescribing physicians to minimize the risks that patients will develop PML (progressive multifocal leukoencephalopathy), caused by a common virus called the JC virus. Three people who had been in clinical trials involving Tysabri developed PML, two of whom died. The drug, which is taken by monthly IV infusion, will be dispensed at registered infusion centers across the country.
According to company sources, there will be a delay between the time of FDA approval and the time when Tysabri is available to patients. Several weeks are needed to develop training materials and to finalize the patient data collection system. The companies hope to commercially launch Tysabri, or make it available for use, in July 2006. Individual patients may experience additional delays, depending on the availability of a nearby registered infusion site and any health insurance coverage issues. |
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 | | MS and Tremors | | What Is Tremor?
Some people with MS may experience a frustrating symptom known as tremor. The National Multiple Sclerosis Society defines tremor as "an involuntary rhythmic shaking movement of the muscles."1A
Tremor can range from subtle shaking to uncontrollable muscle movement. It may impact areas such as the head, face, trunk, arms, legs and vocal cords.2A Typical triggers that may worsen MS-related tremor include stress and fatigue.1C,1D
MS-related tremor may occur when demyelination or scarring damages the nerve fibers in the thalamus. The thalamus is a large group of nerve cells in the center of the brain responsible for releasing incoming sensory impulses (except smell) to higher nerve centers.1A,3A
Types of Tremor
There are many types of tremor, including the following:
Intention tremor: This is the most common and often most debilitating type of tremor in people with MS. Intention tremor occurs only when a person is moving, not during rest. It may happen when reaching for an object, or moving a hand or foot to a specific place.4A
Postural tremor: This occurs when a person is supporting a limb or the entire body against gravity. For instance, someone with postural tremor may experience shaking when standing or sitting, but not when lying.4A
Nystagmus: This tremor occurs in the eyes, causing “jumpiness” in the eyes.4A
Tremor Management
While there is no cure for tremor, you may be able to manage its symptoms1A with one or more of the following methods:
Physical therapy or occupational therapy1E
Prescription medication1F
Stress management techniques1A
Neurosurgery1G
Electrode implants, also known as "deep brain stimulation" or DBS.1G
Speech therapy1B
Tremor affects each person differently, so if you experience tremor, work with your health care team to develop an individualized treatment plan.1A |
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 | | Multiple sclerosis | | Multiple sclerosis
Overview
Multiple sclerosis (MS) is a chronic, potentially debilitating disease that affects your brain and spinal cord (central nervous system). The illness is probably an autoimmune disease, which means your immune system responds as if part of your body is a foreign substance.
In MS, your body directs antibodies and white blood cells against proteins in the myelin sheath surrounding nerves in your brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to your nerves. The result may be multiple areas of scarring (sclerosis). The damage slows or blocks muscle coordination, visual sensation and other nerve signals.
The disease varies in severity, ranging from a mild illness to one that results in permanent disability. Treatments can modify the course of the disease and relieve symptoms.
An estimated 400,000 Americans have MS. It generally first occurs in people between the ages of 20 and 50. The disease is twice as common in women as in men. |
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 | | New research program kicks off in Canada | | | The MS Scientific Research Foundation and the Multiple Sclerosis Society of Canada announced funding May 4, 2004 of a $4.3 million, multi-centre study of children who have had an initial attack (clinically isolated syndrome or CIS). The five-year study will follow the children to find out which ones go on to experience a second attack and be considered to have clinically definite multiple sclerosis (MS). This study will have clinical applicability to children and adults with the disease. It may also identify the key triggers which cause multiple sclerosis. |
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 | | Surving Summer with MS | | | According to The National Multiple Sclerosis Society (NMSS), "Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid … ." This happens, according to the NMSS, because a higher body temperature "further impairs the ability of a demyelinated nerve to conduct electrical impulses." Other heat-related events also may aggravate MS symptoms, including having a fever, sunbathing, or taking a hot shower or bath.1A |
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 | | MS Fatigue | | | Fatigue is something we have all felt and is a normal consequence of physical or mental exertion and emotional stress. Typically, energy is restored with rest and sleep. However, multiple sclerosis is uniquely associated with fatigue that can interfere with all aspects of life. This type of fatigue is not as easily resolved as “normal” fatigue and is the most common symptom/complaint of MS, with 75-95% of people with MS experiencing fatigue. “MS fatigue” occurs daily, worsens as the day progresses and worsens with heat. |
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 | | Gene linked to multiple sclerosis | | GENETICS
UM research uncovers key link to MS
UM researchers have found a gene linked to multiple sclerosis that could have huge implications in treating the disease that affects hundreds of thousands.
BY JOHN DORSCHNER
jdorschner@MiamiHerald.com
After decades of searching, teams of researchers at the University of Miami and elsewhere have found a gene linked to multiple sclerosis that could lead to breakthroughs in understanding and treating the often-devastating disease.
The news is being released today in related reports in Nature Genetics and the New England Journal of Medicine. The studies examined more than 10,000 DNA samples from MS patients in the United States and Europe to discover the genetic link.
Wolfgang Streit, a University of Florida neuroscientist not involved with the research, called the discovery ''somewhat spectacular'' because researchers have been searching for a link for 30 years.
Ultimately, researchers hope the link between the gene and the disease can help pharmaceutical companies discover ways to treat and perhaps even avoid the onset of MS, which often occurs between the ages of 20 and 40.
''This is the kind of major development that we're expecting from our genetics research,'' said Pascal Goldschmidt, UM's medical school dean. He lured more than 50 genetics researchers from Duke University to Miami and persuaded the Legislature to give the school $80 million for genetics research.
''This is one of the reasons we came to Miami, to attack common disorders in this way,'' said Margaret Pericak-Vance, an author on both of the MS papers. ``This is just the tip of the iceberg.'' |
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| Importance of Therapy | | | Importance of Therapy In 1998, the National Multiple Sclerosis Society (NMSS) made its first formal statement (Disease Management Consensus Statement) advocating the use of multiple sclerosis therapy. Based on the recommendation of some of the words. |
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| Knowledge Is Power Series | | | A series called Knowledge Is Power has been developed to help you deal with some of the implications of your recent diagnosis. The series will provide you with current and accurate information about MS, address many of your initial questions and concerns, and start you on the road to coping with this significant life change. In this volume, some of the medical aspects of MS will be explained. |
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 | | Quality of Life of People with Multiple Sclerosis | | March 19, '08: Principles to Promote Quality of Life of People with Multiple Sclerosis
Category: ADDITIONAL MS Resource Sites
Posted by: stuart
Written by: Julie Stachowiak, Ph.D., of: about.com
obtained on : March 19, 2008
What Does "Human Rights" Have to Do with MS?
Usually, the term “human rights” conjures up violations and atrocities, such as prisoners being tortured or genocide taking place in a far-away country. However, human rights have a broader purpose than simply protecting people from the worst things that can happen. To put it simply, human rights are about dignity and what needs to happen (or not happen) so that each person can live with the dignity that they deserve, simply because they are human.
What does that have to do with multiple sclerosis (MS)? Plenty. We did not become less valuable as humans when our immune systems started attacking our myelin and we became less steady on our feet, or slower to find our keys. However, in order for us to live our lives to the fullest and contribute the most we can to society, sometimes we need a little help.
We may need special medical care. We may need our workplaces adapted so that we can do our jobs. We may need transportation and public buildings to be made accessible so that we can get where we need to go and function once we get there.
We are not asking for special treatment. We are asking to let us be humans and do the things that humans do. It is in this spirit that the Principles to Promote Quality of Life of People with Multiple Sclerosis were developed by the Multiple Sclerosis International Federation.
Why Were the Principles Developed?
The introduction to the Principles states: “It should always be kept in mind that the ultimate goal is a cure for MS. However, until a cure is found and can be broadly implemented, it is important to work to maintain or improve quality of life for people with MS...” In this context, the term “quality of life” is defined by the World Health Organization as: |
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| New Medicare Demonstration Project May Help Cover MS Therapy Costs For Eligible Beneficiaries (5/26/04) | | | The National Multiple Sclerosis Society (NMSS) reported that a Medicare demonstration project starting this summer will cover disease-modifying therapies taken at home for several thousand beneficiaries with multiple sclerosis. |
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| Researchers Report Individuals With "Benign MS" Are At Lower Risk Of Developing Significant Disability | | Findings from a study conducted by researchers from the Mayo Clinic suggest that the longer a person has multiple sclerosis and the lower their level of disability, the more likely it is that person will remain stable and not progress.
According to the investigators, the term "benign MS" has been used to describe patients with MS who are doing well. In this study, the authors evaluated individuals in Olmsted County, Minnesota, considered to have benign MS.
The study participants had been first examined in 1991, at which time they had been diagnosed with MS for at least 10 years and had an Expanded Disability Status Scale (EDSS) score of 4.0 or less. Ten years later, in 2001, participants' level of disability was reevaluated.
A total of 47 patients were available for follow-up in 2001. Of those who had minimal or no disability in 1991 (EDSS score of 2.0 or lower), only 7 percent had progressed to an EDSS score of 4.0 or higher in 2001, and none required a wheelchair.
In contrast, 57% of patients with an EDSS score of 2.5 to 4.0 in 1991 had progressed to an EDSS score greater than 4.0 by 2001. "We propose that benign MS be defined as patients with MS for 10 years or more who have an EDSS score of 2.0 or less because they have less than 10 percent likelihood of developing significant disability," the researchers wrote.
They noted, however, that their findings suggest "it is clinically not possible in the early course of disease, using variables analyzed in this study, to determine which patients will be benign."
The report appears in the August issue of Annals of Neurology. |
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.jpg&width=250&height=) | | Whne to tell your boss you have MS, | | When to tell Your Employer that You have Multiple Sclerosis
Shabi Guptha
December 9, 2007
Deciding when to tell your employer of your MS diagnosis is easily as important as deciding when to tell your family. Under ADA rules you do not have to disclose an illness unless it causes a significant challenge in the workplace, or if you are requesting accommodations such as specific equipment or altered work times.
However, multiple sclerosis is unpredictable and while you may be fine today, it is possible for a new symptom to start while you're at work. The best time to inform your employer of the diagnosis may be when you are symptom-free. Arm yourself with information about your illness so that you can reassure your employer and provide needed information.
Explain to your employer the unpredictable nature of multiple sclerosis. If you have been working with your company for a long time, then you may be able to reference a past flare-up in the workplace. For example, Do You Remember a Year Ago when I used a cane because my leg was numb? That was an MS flare-up. Consider making a plan with your employer to deal with flare-ups in the workplace. |
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 | | Accelerated Cure Project for Multiple Sclerosis, a national nonprofit organization | | Accelerated Cure Project for Multiple Sclerosis, a national nonprofit organizationAdditionally, samples and data are collected from a number of other similar diseases including Transverse Myelitis, Neuromyelitis Optica, ADEM, and Optic Neuritis to enable studies in these rare neurological disorders and to provide controls for MS studies.
Collection Sites
Contributing to the success of the project is an impressive list of research centers across the country that have joined Accelerated Cure Project as collection sites for the repository. These include Johns Hopkins Medical Center (Baltimore, MD), University of Massachusetts Memorial Medical Center (Worcester, MA), University of Texas Southwestern (Dallas, TX), Multiple Sclerosis Research Center of New York (New York, NY), Barrow Neurological Institute (Phoenix, AZ) and the Shepherd Center (Atlanta, GA).
The Accelerated Cure Project intends to continue collecting samples from as many as 10,000 subjects for its MS Repository. If you have MS (or another demyelinating disease) or are related to someone with MS and would like to participate in the project, please call 781/487-0008, visit acceleratedcure.org/repository, or send an email to info-web1207@acceleratedcure.org. |
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