Multiple Sclerosis and Sleep

Multiple Sclerosis (MS) is a disorder in which the body's immune system attacks and destroys myelin, a membrane that covers axons in the brain and spinal cord. Myelin serves both to protect axons and to speed the conduction of electrical impulses along nerve fibers. The destruction of myelin results in scarring and loss of nerve cells and can lead to a whole host of symptoms for MS patients, including paralysis, depression, loss of memory, fatigue and problems with vision, balance, bladder and bowel control. However, because it is a disease that progresses slowly, MS can be very mild for some patients and many people with MS are able to lead full and active lives.

According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, MS is more common in women than men and is more than twice as likely to affect white people than people of other races. Also, the prevalence of MS among people in the more northerly climate zone is five times higher than for people in the tropics. The cause of MS is unknown but environmental, viral and genetic causes may play a role. MS is not fatal or contagious, although severe symptoms may lead to a shortened or decreased quality of life for some people.

Fatigue, one of the most common symptoms of MS, can be profoundly disabling. The cause of fatigue in MS is not well understood but some researchers believe that the degree of fatigue felt by MS patients is an indication of how far along the disease has progressed. However, a recent study conducted by researchers from Pennsylvania State University found that depression and sleep disturbance were stronger predictors of fatigue in MS patients than disease severity. Specifically, the results of this study showed that all three contribute to fatigue in MS, but that sleep disturbance is the biggest contributor.

MS is also associated with a number of sleep disorders. According to a study led by W. Elon Fleming, MD, at the Sleep Disorders Center at Island Hospital in Anacortes, Washington, the most common sleep disorders in MS patients are insomnia, nocturnal leg spasms, narcolepsy, REM sleep behavior disorder, and sleep disordered breathing. Restless legs syndrome (RLS) is also highly prevalent among MS patients. One study revealed that among 156 MS patients, 51% met the criteria for RLS based on neurological examination and medical interview and that RLS was associated with higher MS-related disability. Medications used to treat MS may also cause or worsen these problems. The study also showed that pain, medications and frequent nighttime urination influenced sleep among MS patients.

Reducing fatigue and improving sleep is critical to improving the lives of people with MS. There are many options for improving sleep, including both behavioral and pharmaceutical remedies. It is very important that physicians screen for sleep problems among their MS patients and that they are aware of the options to treat them.

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Alternative and Complementary Therapies for Multiple Sclerosis

Researchers map use of alternative treatment among multiple sclerosis patients

Published April 19, 2013

A major Nordic research project involving researchers from the University of Copenhagen has, for the first time ever, mapped the use of alternative treatment among multiple sclerosis patients - knowledge which is important for patients with chronic disease and the way in which society meets them.

People with multiple sclerosis (MS) often use alternative treatments such as dietary supplements, acupuncture and herbal medicine to facilitate their lives with this chronic disease. This is the result of a new study of how MS patients use both conventional and alternative treatments which has been carried out by researchers from five Nordic countries. The results have been published in two scientific journals, the Scandinavian Journal of Public Health and Autoimmune Diseases.

"What we see is that patients do not usually use alternative treatments for treating symptoms, but as a preventative and strengthening element," says Lasse Skovgaard, industrial PhD candidate from the Faculty of Health and Medical Sciences and the Danish Multiple Sclerosis Society, who has been involved in conducting the questionnaire-based study among 3,800 people with MS in Denmark, Sweden, Norway, Finland and Iceland.

Multiple sclerosis is a chronic disease which attacks the central nervous system, and which can lead to a loss of mobility and sight. Denmark is one of the countries with the highest incidence of the disease worldwide, with approx. 12,500 MS patients. At the same time, the number of MS patients in the West is increasing, posing considerable challenges in respect of treatment, prevention and rehabilitation.

Access to knowledge bank

Together with researchers from the five other Nordic countries, Lasse Skovgaard has spent three years gathering the new data, and he is delighted at what it offers:

"Within the field of health research, it is often a question of studying the extent to which a particular type of drug affects a particular symptom. However, it is equally as important to look at how people with a chronic disease, for example, use different treatments to cope with their situation. Here, MS patients offer valuable experience. Their experiences constitute a knowledge bank which we must access and learn from," he says.

Lasse Skovgaard draws attention to the significance of this new knowledge because, if people with chronic disease are better able to manage their lives, it can potentially save society large sums of money.

"There is a lot of talk about 'self-care competence', in other words patients helping themselves to get their lives to function. Here, many people with a chronic disease find they benefit from using alternative treatments, so we should not ignore this possibility," says Lasse Skovgaard.

At the same time, he emphasises that knowing more about why patients choose particular treatments is important in relation to improving patient safety because of the possible risks involved in combining conventional and alternative medicine.

Growing use of alternative treatments

According to the latest Health and Sickness Study from the Danish National Institute of Public Health (NIPH) in 2010, one in four Danes say that they have tried one or more types of alternative treatments within the past twelve months. Among MS patients, the use of alternative medicine has been growing steadily over the past fifteen years. In the researchers' latest study, more than half of the respondents say that they either combine conventional and alternative medicine or only use alternative medicine.

"We cannot ignore the fact that people with chronic disease use alternative treatments to a considerable extent, and that many of them seem to benefit from doing so. It doesn't help to only judge this from a medical point of view or say that alternative treatments are nonsense - rather, we must try to understand it," says Lasse Skovgaard.

Highly qualified women top the list

The study shows that, among MS patients using alternative treatments, there is a significantly bigger proportion of people with a high level of education compared to those who do not use alternative treatments. There is also a larger proportion of highly paid people and of younger women.

"Some critics are of the opinion that when alternative treatments are so popular, it is because they appeal to na-ve people looking for a miraculous cure. But our results indicate that it is primarily the well-educated segment that is subscribing to alternative treatments. And that using alternative treatments is part of a lifestyle choice," says Lasse Skovgaard.

He hopes that the new knowledge will improve communication regarding how the chronically ill use alternative treatments in combination with conventional medicine:

"We see that so many people are combining conventional medicine with alternative treatment that it should be taken seriously by the health service. Until now, there hasn't been much focus on the doctor-patient dialogue in relation to the alternative methods used by the chronically ill to manage their lives," says Lasse Skovgaard. He says that the research group is continuing to analyse the results and, among other things, is conducting several interview studies based on the results of the questionnaires. The interview studies will, for example, provide additional knowledge on how patients perceive the risks associated with using alternative medicine and explore why some patients turn their backs completely on conventional medicine.

Source: University of Copenhagen

Source of the above article: News-Medical.net

Complementary & Alternative Medicine

April 2013

Complementary and alternative medicine (CAM) includes a variety of interventions—from exercise and dietary supplements to stress management strategies, biofeedback, and acupuncture. These therapies—which come from many different disciplines and traditions—are generally considered to be outside the realm of conventional medicine. When used in combination with conventional medicine, they are referred to as “complementary;” when used instead of conventional medicine, they are referred to as “alternative.”

In the United States today, approximately 75% of people with MS use one form or another of CAM, generally in combination with their prescribed MS treatments. For more information about complmentary and alternative medicine, please watch these two short videos. Part 1 & Part 2

Are CAM Therapies Safe to Use?

Many people use CAM because they believe that anything sold over-the-counter at a pharmacy or health food store is healthy and harmless. However, unlike conventional medical treatments—which are thoroughly tested and carefully regulated by the U.S. Food and Drug Administration—most CAM therapies have undergone very little, if any, scientific study. So some may be completely safe while others may actually pose significant risks—for example, by producing serious side effects or interacting negatively with other medications a person is taking.

Fortunately, a greater effort is now being made to find ways to evaluate the safety and effectiveness of various types of CAM.

Why are Controlled Clinical Studies So Important?

Carefully-designed clinical trials are the best way to determine whether a treatment is safe and effective. Here are the reasons why:

• Because the course of MS is variable, and each person’s symptoms tend to come and go in an unpredictable way, the only way to determine the effectiveness of a treatment is to test it on a large number of people.
• Because most people—regardless of the disease they have—will have a positive response to any new treatment they receive (even if it’s an inactive substance or placebo), the effectiveness of a new treatment can only be proven by comparing it to a placebo or to another treatment that has already been shown to be effective.
• Because every treatment carries with it the risk of anticipated and unanticipated side effects, the only way to evaluate a treatment’s safety is to evaluate it in a large number of people over a sufficient period of time.

Recommended Guidelines to Follow

People who are considering using a CAM therapy should ask the following questions:

• What does the treatment involve?
• How and why is it supposed to work?
• How effective is it?
• What are the risks?
• How much does it cost?

The answers to these questions can help a person considering a CAM therapy to weigh the benefits against the risks. For those who decide to go ahead with the CAM therapy, here are some good, common sense recommendations:

• Keep your physician informed about everything you are taking. Not sharing this important information is like asking your physician to treat you blindfolded—and knowing everything you are taking will allow your doctor to alert you to possible side effects or drug interactions.
• Don't abandon conventional therapy. The treatments your physician prescribes for you are the ones that have been evaluated in controlled clinical trials or accepted by the MS medical community as safe and effective therapies. So stay with your prescribed treatments even if you decide to add CAM to your treatment plan.
• Document the experience. Keep a detailed log of what you take or what is done and any changes you experience. Use this form to track your prescription and over-the-counter treatments. (.pdf)

Check out These Complementary Approaches to Physical Health and Emotional Well-Being

• Food and Diet—Although various diets have been promoted to cure or control MS, no diet has been proven to modify the course of MS. MS specialists recommend that people follow the same high fiber, low fat diet that is recommended for all adults.
• Exercise— Exercise offers many benefits for people with MS. In addition to improving your overall health, aerobic exercise reduces fatigue and improves bladder and bowel function, strength, and mood. Stretching exercises reduce stiffness and increase mobility. The physicial therapist can recommend an exercise plan to fit your abilities and limitations.
• Stress management—The relationship between stress and the onset or worsening of MS is far from clear—and different types of stress appear to affect different people in different ways. But none of us feel our best when we’re stressed, so it’s important to find the stress management strategies that work best for you.
• Acupuncture—Acupuncture is finding its way into Western medicine, with studies suggesting possible benefits for a wide range of problems.

Some Complementary Approaches to Avoid

• Removal of amalgam fillings—There is no scientific evidence to connect the development or worsening of MS with dental fillings containing mercury, and therefore no reason to have those fillings removed. Although poisoning with heavy metals-such as mercury, lead, or manganese-can damage the nervous system and produce symptoms such as tremor and weakness, the damage is inflicted in a different way than occurs in MS and the process is also different.
• Bee sting therapy—In spite of long-standing claims about the possible benefits of bee venom for people with MS, a 24-week randomized study showed no reduction in disease activity, disability, or fatigue, and no improvement in quality of life.

What Do We Know about Cannabis (Marijuana)?

Based on the studies to date—and the fact that long-term use of cannabis may be associated with significant, serious side effects—it is the opinion of the Society's National Clinical Advisory Board that there are currently insufficient data to recommend marijuana or its derivatives as a treatment for MS symptoms. However, research is continuing to determine if there is a possible role for marijuana or its chemical derivatives in the treatment of spasticity and pain. In the meantime, Health Canada, the drug regulatory agency for Canada, has approved the use of the cannabis-derived drug Sativex® (GW Pharmaceuticals) to treat MS-related pain. Read more on cannabis.

Low Dose Naltrexone

Naltrexone is approved by the FDA for the treatment of addictions to opioids and alcohol. At the full recommended dose, Naltrexone blocks opioid docking sites on cells. At significantly lower doses, it has been prescribed as a treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as MS and other autoimmune diseases. There has been limited clinical study of low dose Naltrexone (LDN) to treat MS, but in spring 2010, results from a pilot clinical trial were published. Read more about LDN and MS.

Article Source: The National Multiple Sclerosis Society (NMSS) -

What Is Recreation Therapy And How Can It Help You?

By: MSF Staff and reviewed by the MSF Medical Advisory Board

What is Recreation Therapy?

Recreation therapy is one of the fastest-growing professions today, yet many people have never heard of the term.

Recreation therapy (RT) is the use of leisure activity to achieve a treatment goal. Therapeutic activities can include art, friendship development, dance, outdoor experiences, therapeutic sports, and more. Recreation therapy can be done in may different settings, such as hospitals, rehabilitation centers, nursing homes, community parks departments and independent living centers.

The many benefits of recreation and leisure have been scientifically documented. These include improved physical fitness and coping skills, reduced stress, an improved sense of self-confidence and self-reliance, and enhanced self-esteem. While traditional therapies tend to treat illness, RT can help to develop and maintain good health. In contrast to regimented exercise program, RT focuses on activities that address a person's physical and emotional needs. For those with chronic conditions this is especially important, since physical abilities may change.

How Is Recreation Therapy Done?

Recreational therapists are certified professionals who work with doctors and rehabilitation specialists to assess a person's abilities and design a plan of activities. Activities are selected to achieve treatment goals, such as muscle strengthening or improved self-confidence, and to provide pleasure and satisfaction. Participants are encouraged to be involved in selecting the activities that bring the most enjoyment!

For the disabled, available recreation may be very limited. However, recreation therapy can provide a wider range of leisure activities. Some programs may offer special facilities for those with disabilities, or they may train the patient and their family how to adapt the activity to their abilities. With a little planning, most recreation can be adapted to suit people of many levels of ability.

What About The Cost?

A common barrier to participating in recreational activities is the cost since many people with disabilities live on limited income. However, RT does not have to be expensive. Some insurance may pay for a consultation with a recreational therapist, who can design a program involving low-cost activities. Local parks and recreation departments may have recreational therapists on staff and are generally within a person's budget.

Source: MS Foundation

MS Exercise: Staying Safe