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Managing Individuals with Multiple Sclerosis

Therapeutic Strategies

Labe C. Scheinberg

The management of individuals with multiple sclerosis (MS) is divided into the prophylactic, curative, symptomatic, and restorative phases. It entails medical or pharmacologic measures, surgical measures, psychological, and physical or rehabilitative methodologies. Often there is overlap with rehabilitation employing medical, psychological, and surgical intervention. Some of the things I will mention are so basic to the tenets of medical practice that I am embarrassed to mention them here, except that from my observations, they are so often neglected in the daily management of MS patients that they need restatement.

Few diseases are as complex in the overall management or as difficult to evaluate as MS in a patient. It often requires over the course of the illness, the multiple disciplinary intervention of a host of medical and nonmedical health professionals. The latter includes such people as advocates to the disabled, health policy planners, and environmental designers or engineers. There are, for the neurologists who are usually the managers of the patient in the course of the illness, several important principles.

Neurologists should keep in mind that there is no prophylaxis for the disease, no cure, or even any proven effective disease-modifying agents. I wrote this prior to the latest disease-modifying breakthrough and I sort of want to reserve judgment on this, though numerous claims are made in the media every year. However, there are numerous effective symptomatic treatments for things such as spasticity, pain, urinary findings, and so forth. These are frequently overlooked.

I think the biggest breakthrough in the care of the MS patient was not the discovery of an immunosuppressant agent, but that by Jack Lapides, a urologist at the University of Michigan, who reintroduced, and I say reintroduced because it was present for many years, but Lapides reintroduced intermittent self catheterization for patients. I think this has made a great deal of difference in the management and life expectancy of MS patients.

A decade or two ago, we would have at least 1 patient a week admitted to the hospital with advanced urosepsis, and we would have a great many fatalities as a result of this. For the past 5 years or more, we have not had any cases of severe urinary tract infections, no urosepsis, and almost no deaths due to to this. I think the life expectancy and the quality of life have improved a great deal in the management of MS. I think the advances we have made in the management of MS have been made as a result of our directing our attention to specific symptoms in MS patients and not to any of the scientific advances that we have made.

I see patients who come in with spastic paraparesis, are in great pain, cannot abduct their legs for the sake of sanitation, even giving stories that when they have their menstrual periods, the neighbors have to be called in to abduct the patient's thighs for sanitary napkins. These are things that are easily handled but are totally neglected because the patients and doctors are looking for the "breakthrough."

The neurologist should also keep in mind that he is able to manage anything that does not require surgery or long-term deep psychologic therapy. There is a temptation to overuse consultants. For example, it is not necessary to ask for ophthalmological consultation of intemuclear ophthalmoplegia or for optic neuritis or request urological consultation for simple urinary findings. This referral often leads to fragmentation and increased cost of care. There is the need for the neurologist to play a very active role in the early diagnostic revelations and education of the patient and family and not to relegate these matters to social workers, nurse clinicians, or even a chapter volunteer whose only expertise is based on personal or family experience with MS.

This sort of thing I see as very important. The neurologist should take the responsibility of telling the patient and talking to the patient, educating the patient. You cannot relegate this to someone else.

If you want to take care of MS patients you should learn some rehabilitation. I have done this and learned a great deal about the management of MS patients. Most of what we do in the improvement of our MS patients is through the patient's own abilities, by exposure to rehabilitative measures.