MS Minute: A Brief History of MS Care

Care for the person with multiple sclerosis (MS) considers all aspects necessary for the health, welfare, maintenance, and protection of the person. The individual with MS as well as family, friends, professionals, and health services all play a part.

Care of the person with MS is about the disease and the person’s personal needs. Part of the care includes a trustful and respectful relationship between the individual and health care professionals. Whereas neurologists are involved in MS management, the primary care physician is important as well because persons with MS contract or develop illnesses that require general health care and need preventive care services. People with MS and their families may need advice on navigating the health care system and community services and where to get reliable information. Care applies to care partners as well because they may neglect their own health.¹

The Evolution of Care

The approach to care for the person with MS has evolved over time and continues to do so. Every society has had an approach to caring for the sick based on the prevailing belief system of disease. Approaches to the care of a person, treatments, and how research is directed depend on how diseases are framed.²

The 4 Humors

For hundreds of years, persons with a chronic disease were treated in the same way, based on the theory of the 4 humors, with treatments designed to bring the humors into balance. Progressive neurologic diseases, mostly lumped together as 1 condition, would be treated with bed rest, herbal medicines, bleeding, and purging. This approach to treatment persisted into the late 19th century, even after science had rejected the underlying concept. This was the approach to care for St. Lydwina of Scheidam, Holland (1390–1433), who had a progressive neurologic disease, likely MS, in the early 15th century. In St. Lydwina’s case, however, the leaching and medications were discontinued when the court physician, Godfreid de la Haye, said the illness came from God and all the medical therapies would just impoverish her family. St. Lydwina was cared for by nuns and the community and lived with her illness for 37 years.³

Depletive Treatments

During the 18th century, physicians treated neurologic disorders with a pharmacopeia of medicines and herbs, lifestyle changes, and depletive treatments (eg, leeches, scarification, bleeding, and cupping).⁴ Many conditions were considered “nervous disorders,” resulting from nervousness and stress, both the result of internal and external influences. A person with a progressive neurologic weakness or disability would be diagnosed with “paraplegia.” Treatments for the various conditions were much the same. Although ordinary citizens were cared for at home by family, local healers, and wise women, affluent individuals were advised to visit spas, enjoy sea voyages, travel to dry climates, or enjoy the country air.

MS as a Separate Neurologic Disorder

Sir Augustus D’Esté (1794–1848), the grandson of King George III, was a prominent individual with MS before it was described as a separate neurologic disorder. His written record of his symptoms, consultations with prominent physicians, and treatments provide a picture of the attitudes toward and therapies for “paraplegia” during his time. Therapies included drinking and bathing in medicinal water, ingesting beefsteaks with porter twice a day, rubbing the legs with brushes, receiving slaps on the back, riding horses, placing counterirritant plasters to inflame the skin, using herbs and flowers, sea bathing, spa therapy, using Spanish fly, receiving electrical shocks and galvanism, undergoing hydrotherapy, and receiving wet-sheet wraps. D’Esté found walks, horseback riding, warm baths, and the highland air of Scotland to be the most helpful.⁵

In 1868, Jean-Martin Charcot named and framed MS, calling it la sclérose en plaques.⁶Charcot’s 3 published lectures on the disease made it possible for others to diagnose MS and distinguish it from other neurologic diseases. Charcot, although pessimistic about treatment, prescribed numerous medicines and physical therapies to his patients. Pierre Marie, a student of Charcot, wrote in 1884 that MS was due to infection and people with MS needed medications aimed at reducing inflammation. Marie believed a vaccine would soon be able to eradicate the disease.⁷

Before the 19th century, few hospitals provided care for an individual with a progressive disability; those that did were similar to poorhouses, crowded by sick, dying, poor, and homeless individuals and people in debt. Care was often provided by religious groups.

In the 19th century, neurologic disorders in some individuals were thought to be related to an inherited neuropathic constitution. Another concept of neurologic diseases was that symptoms were caused by overstimulation or depressant influences on the nervous system. As a result, therapies were applied to supress or stimulate the nervous system.

Honesty, sharing of information, and truth-telling are important aspects of care. The long-standing belief that individuals cannot handle news of a serious diagnosis is in part due to a lack of faith in the individual’s resilience and physicians’ distaste for and poor training in delivering bad news. Bruce Frederick Cummings (1889–1919), a young naturalist at the Natural History Museum of London, recognized he had a serious illness. However, none of the many doctors he saw would tell him what was wrong. One mentioned in his diary was the prominent “H.H.” (probably Sir Henry Head). Cummings wrote about his struggle under the pen name W.N.P. Barbellion.⁸ To receive a diagnosis, he tried to enlist in the military, knowing he would be refused but would have to be told why. After being examined, Cummings peeked at the chart and read the words “disseminated sclerosis,” the term for MS used in England.

Care and Treatment for the Person with MS

Early in the 20th century, although knowledge of MS increased, attitudes toward treatment remained pessimistic. This does not mean that neurologists did not offer treatments and advice: the list of therapies used was very long. Although neurology was developing as a clinical specialty, neurologists were known as diagnosticians—adept at history-taking and examination but lacking in prescribing helpful therapies. Only after the 1960s did the specialty slowly transform from a diagnostic to a therapeutic specialty.

Until recently, neurologists were pessimistic about therapy for MS because they believed therapies could not help individuals. As a result, most neurologists were not interested in following their patients after making a diagnosis. Paradoxically, hundreds of therapies were used for MS. In the 1930s, Brickner ⁹ listed 158 therapies used in MS; in the next few decades, the list grew longer.

In 1955, McAlpine and colleagues¹⁰ published the first major book on MS. Although they believed no therapy would slow disease progression, they emphasized good general care. Suggesting that onset and relapses can be caused by hyperactivity, fatigue, emotional stress, or an underlying infection, they provided advice on how to mitigate these influences. They believed the individual should not be told the diagnosis and should not marry or bear children, which would have to be relayed with sensitivity to the individual. The view that not telling an individual the diagnosis was a kindness was widely held by neurologists, including leaders in the field (eg, Houston Merritt and Foster Kennedy).³

Sylvia Lawry, whose brother Bernard had MS, was frustrated by the lack of information about what to do. She put an advertisement in the New York Times:

“Multiple Sclerosis: will anyone recovered from it please communicate with patient. T272 Times” (May 1, 1945)

Lawry received numerous responses and formed what would become the National MS Society.³ This was a significant development because it greatly supported research into better care and understanding of MS and served as a source of information and support for individuals with the disease.

Systems of MS Care

After World War II, the public increasingly believed that science and technology offered the possibility that most diseases could be conquered. Professional competence was valued over the personal approach in clinical encounters, giving rise to a sense that medicine was getting less personal.¹¹ A different approach was developing in rehabilitation hospitals, spurred on by governments that believed they were responsible for the wounded and disabled casualties of the wars. The emphasis on managing and coping with disability and preventing complications prevailed over the emphasis on a cure, which greatly helped individuals with MS that caused disability.

People became disappointed in traditional medicine and increasingly turned to therapies advertised or heralded in the media as possible breakthroughs, including those with no scientific basis.

The early MS clinics were designed for general care, a multidisciplinary approach, and research and clinical trials. However, the approval of the first disease-modifying therapy in 1993 drove important changes. Interest in people with MS and the expansion of MS clinics was a major step forward in the care of individuals with MS and their families. The focus became multidisciplinary, with a strong emphasis on the complexity of managing the numerous new drugs, the testing required, and attention to the potential complications of treatment.

Moving Forward

In caring for the person with MS, we have moved from care by an individual physician to care by a cadre of health care professionals and social services that meet the needs of individuals. Although the new MS drugs have improved outcomes, their management is complex.

The primacy of the individual is recognized in care and the term “guided self-management” is a useful concept as it recognizes that the individual has to manage a lifelong condition with support from many professionals and agencies to advise, assist, and guide them throughout the years. The many multidisciplinary MS clinics bring together various professionals—including neurologists, rehabilitation specialists, psychologists, nurses, physiotherapists, occupational therapists, speech therapists, and social workers, among others—who have knowledge and skills to address the different needs of each individual. An organization such as the Consortium of MS Clinics brings those professionals together to learn from one other. This multidisciplinary supportive approach assures sensitive, respectful, and exemplary collaborative care at a time when the management of therapeutics has become more time-consuming and complex. The approach requires good communication among all involved to avoid fragmentation of care and services.

Summary

In the past, physician offices, hospital clinics, and inpatient services were designed for the comfort, efficiency, and primacy of the professionals and the administration. It is important that, in the future, services be centered around the person with MS and systems designed for the comfort, efficiency, and primacy of the individual with MS.