Understanding Multiple Sclerosis: A Concise Guide to Diagnosis & Treatment of Multiple Sclerosis
Home Accessibility: Tips for Making Life Easier is designed to help people with chronic illness, physical disability, and age-related limitations make their homes safer and more accessible without costly remodeling or structural changes. MS for Dummies gives you easy to access, easy to understand information about what happens with MS—what kinds of symptoms it can cause, how it can affect your life at home and at work, what you can do to feel and function up to snuff, and how you can protect yourself and your family against the long-term unpredictability of the disease.
Chapters discuss the nature of MS, its management, and guidelines for dealing with all aspects of the disease and its impact on your life. A chapter on services available from the National Multiple Sclerosis Society, a glossary, a list of resources, and additional reading suggestions make this the place to begin your education about MS. For patients at any stage and the people who support them, Multiple Sclerosis: Questions and Answers for Patients and Loved Ones provides the answers you need to understand this disease, its challenges, and the medical treatments and other tools now available for managing it successfully.
The author demonstrates how progress in diagnosing and managing multiple sclerosis has paralleled the development of medical science, from the early developments in modern studies of anatomy and pathology, to the framing of the disease in the nineteenth century, and eventually to modern diagnosis and treatment. The thoroughly revised and updated fifth edition of the classic Multiple Sclerosis: The Questions You Have, The Answers You Need continues to be the definitive guide for everyone concerned with this disease—those who have MS, those who share their lives with someone who has it, and all healthcare professionals involved with its management.
It covers a wide range of topics in an accessible question and answer format that allows people to easily find the information they need. Because Multiple Sclerosis is a disease that someone will live with for years, or even decades, it is important for family and friends to understand what the person is going through and learn how to give support.
From the first moment of her diagnosis, author Margaret Blackstone took charge and educated herself on every aspect of her condition. Now, as a "patient-expert," she guides those newly diagnosed step-by-step through their first year with MS. She provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. You just need to be an expert in you.
Navigating Life with Multiple Sclerosis
Although there is no cure yet , feeling confident and in control of your disease management is the next best thing. After identification of such targets, pharmacological methods can be developed for regulating the activity of these critical molecules. The impact of electrical activity within neurons and of exercise and physical therapy should be investigated in regard to disease progression and functional capacities.
This will require the development of better tools to measure function. Since there are, as yet, no treatments that cure MS or halt disease progression entirely, it is important to develop integrated approaches to testing those agents that can at least modify the course of the disease. Such trials are expensive and lengthy, and they require large numbers of patients.
Agents of different classes will have to be tested in sequence and in combination.
Such trials are also best done when the dose range and safety profile of each individual agent to be employed in the trial are known, and the potential for adverse drug interactions should be carefully monitored. Separate end points might be required for each agent as appropriate to its individual pharmacological profile.
Most importantly, standardized protocols and assessments will have to be devised and agreed upon, including Phase II studies that will allow abandonment of ineffective combina-. The committee noted that many of the pivotal MS clinical trials on disease-modifying therapies were terminated early, usually because of predetermined stopping rules, and, thereby, lost unique opportunities to obtain critical data. Although it is not generally feasible for voluntary health organizations such as the National MS Society to lead their own clinical trials, they can and should continue to play an advisory in the design of large-scale clinical trials.
Sometimes a person will recover, sometimes not. For most people, living with MS will become one of the major challenges of their life. Given the millions of people currently living with MS, and those expected to do so in the future, it is important that the focus on curing MS not come at the expense of efforts to address the disruptions that pervade routine daily activities, personal relationships, family life, work responsibilities, and social involvement. Improving the lives of people with MS rests on better understanding of both their needs and their successes, specifically research into the conditions of life with MS, which requires objective, reliable research tools.
The most essential tools are the various survey instruments that measure abilities to function and quality of life, which are discussed in the latter part of this chapter. These tools not only provide for objective assessment of the needs of people with MS, but also are an essential element of measuring the effectiveness of any sort of therapeutic intervention—be it a rehabilitation process, a self-help program, or a disease-modifying therapy.
Quality-of-life measures can also reveal aspects of the disease process that are not readily captured in standard clinical measures and can often provide more sensitive outcome measures of the clinical efficacy of new therapies. Perhaps most importantly, they measure the outcomes that concern patients the most see Box 2 for summary. Recommendation Health status assessment methods for people with MS should be further developed and validated to increase the reliability and power of clinical trials and to improve individual patient care.
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Recommendation Research strategies aimed at improving the ability of people with MS to adapt and function should be developed in partnership with research practitioners, managers, and patients; toward this end, a series of forums to identify the most pressing needs experienced by people with MS should be convened.
Quantifying health status, including functional status and quality of life, for persons with MS is essential for several reasons. Given the chroicity and uncertain course of MS, tracking its impact over time can assist with care of individual patients, suggesting near-term prognoses and the need for various interventions. Tabulating these findings across individuals offers insight into the burden of MS-related disability within populations, information increasingly used to set research, health, and social policy priorities.
Longitudinal studies of the trajectory of functioning and quality of life should help to define the natural history of the disease and expand understanding of its clinical epidemiology and patterns of progression. Finally, functional status and quality of life are critical end points in measuring the effectiveness of therapy, both for clinical trials and for routine patient care.
100 Questions & Answers About Multiple Sclerosis
Clinical neurology should move toward adopting as a standard of care a concise measurement of health status that includes quality-of-life measures, as well as impairment and disability measures. This could serve as the basis for communication between physicians and other caregivers and for increasing the efficiency and thoroughness of consultations between patients and physicians, particularly if filled out by patients before meeting with the physician. If longterm records of such data were maintained in a data registry, they would also provide much-needed insights into the natural course of the illness.
Individual records would provide information about patient health that would not normally be collected in routine clinical exam. The development and validation of new impairment and disability measures should continue to be supported. Validation of the MS Functional Composite Scale should continue, particularly to measure its sensitivity to changes in patient condition over time. The goal of such forums would be to define research needed to identify ways to help people with MS adapt to the illness and enhance their ability to function.
The committee did not include the expertise to develop a research agenda to meet needs as experienced by patients. Indeed, there is such a small body of empirical research on this topic that the committee felt it was perhaps premature to specify the most appropriate research strategies. Rather, the committee recommends that the MS Society work in partnership with people with MS to guide the development of specific research strategies that will identify the most effective approaches toward improving their everyday lives.
A series of forums could provide the needed perspective to defining those research strategies and should include the following constituencies:. The MS Society should identify specific individuals, including those whose work focuses on related issues outside the field of MS. Since the research community that deals with these issues is so small and has so many fewer funding resources than biomedicine, it is essential to look more broadly for resources.
Preface | Current Medical Diagnosis and Treatment | AccessMedicine | McGraw-Hill Medical
The needs of people with other chronic, debilitating diseases have much in common with those of people with MS. The MS Society should work with other relevant societies and government funding agencies to identify the most important research questions to address the goal of improving the lives of people with chronic and debilitating diseases, such as MS. New strategies are needed to improve dissemination of the latest research information and the best methods of informing patients so they can take the fullest advantage of treatment options and available assistance. This includes developing a better understanding of the most effective timing, settings, and modes of delivering information.
Some information is important to deliver at the time of diagnosis for example, what to expect in the next few years, how to ensure health care ; other information is only of interest to patients much later in.
Modes and settings are also important determinants of effective communication. Certain information is best imparted by a health care provider during a private, scheduled visit; other information is best gained in a group setting. Some information has to be processed and molded to fit individual needs, and this is often accomplished more effectively in the back-and-forth exchange of a group setting.
Uses of computers, including the Internet and chat groups, should be researched.
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The foundations of scientific progress are laid in the building and maintenance of the research enterprise. Recommendation New researchers should be actively recruited to work in MS, and training programs should be designed to foster productive interactions with established investigators both within and outside the MS research community. Recommendation Concerted efforts should be made to stimulate enduring interdisciplinary collaborations among researchers in the biological and non-biological sciences relevant to MS and to recruit researchers from other fields into MS research.
Recommendation Programs to increase research efficiency should be developed, including collaborations to enable expensive large-scale projects e. Recommendation New strategies should be developed to encourage more integration among the different disciplines that support and conduct research relevant to improving the quality of life for people with MS. Recommendation To protect against investing research resources on false leads, there should be an organizational structure to promote efficient testing of new claims for MS pathogens and disease markers.
In the last few decades there has been a tremendous influx of talented researchers into the field of neuroscience. Yet committee members observed that this burgeoning pool of researchers has not been drawn to MS research in the same numbers as they have to other neurological diseases. To bring new researchers into MS, it is not enough to rely on those who have already shown an interest in it.
Active outreach is necessary. Funding new researchers is of little value without the ability to sustain the investment. Attracting new researchers should be balanced with reasonable expectations that successful researchers can continue.
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In the s, more Ph. During such periods, recruitment efforts by private research foundations might be more productive if they were to shift the balance of their efforts towards reducing support for training Ph. Concerted efforts should be made to stimulate enduring cross-pollination among the different research areas relevant to MS. It is not enough to bring in researchers from other fields to participate in isolated workshops. Rather, sustained interactions that promote productive collaborations or the development of new ideas must be fostered. Programs to encourage cross-pollination should target individual researchers.
More cross-talk between clinical and basic scientists is needed. One means of stimulating more exchange between basic researchers and clinicians would be to provide special funding for sabbaticals in which basic scientists could work with clinicians. There was a sense among the committee that MS has attracted less interest from basic neuroscientists than other neurological diseases.
This should be actively encouraged by organizing symposia at scientific meetings, such as those of the Society for Neuroscience where MS research has received relatively little attention. The committee recommends that the MS Society consider exploring less conventional approaches such as those tried by other health care foundations.
The MS societies should consider leading an effort to identify and develop successful models of collaboration. Although these societies cannot fund many clinical trials, it might be able to work as a catalyst to facilitate more effective, far-reaching clinical trials, for example, by bringing together the right people. This would also include the development of data registries that would apply to natural history studies and long-term therapeutic evaluations. This would include research on the instruments used to assess quality of life, employment issues, personal independence, and the identification of optimal models of caring for people with MS.
Research in these areas has too often proceeded in parallel paths with little apparent recognition of the work of others. For example, many articles about the psychosocial aspects of MS are published in nursing, psychology, physiotherapy, and neuroscience journals, and yet they often fail to cite articles on the same topic published outside their professional disciplines. Because the health policy research field is relatively small and research funds are limited, partnerships should be developed among MS societies and with other health research organizations that target diseases that confront patients with similar challenges.
Although each of these diseases has some unique features, for the most part, the research techniques, patients' needs, and even the investigators themselves overlap across different diseases, particularly chronic, debilitating diseases. Examples of such diseases include rheumatoid arthritis, diabetes, Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis ALS.
Much of the research on quality-of-life issues for any of these diseases is likely to be relevant to people with MS.