The Patient’s Perspective

Published on 12/04/2015 by admin

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Chapter 2 The Patient’s Perspective

“You know more about this than I do.” A neurologist made this comment at the end of my second visit in 1994. My immediate internal reaction was, “If that is the case, I need another neurologist!” But such was the lack of knowledge of restless legs syndrome (RLS) at that time. The awareness of primary care physicians was even less—few of them had ever heard of RLS. Sleep was discussed much less than sex.

Actually, I was one of the very lucky ones. Several months earlier, I had been awakened and forced out of bed one night by some nearly indescribable symptoms. Fortunately, I recalled a book we had on our bookshelves downstairs, The Doctor’s Book of Home Remedies, published by the editors of Prevention magazine. In the index under “legs,” I found “restless,” turned to pages 522-525, and found an accurate description of what I had just experienced.

While the Internet was still in its infancy, additional information emerged slowly. Somewhere, I found a reference to the original office of the National Sleep Foundation in California. In turn, they gave me the name of Virginia Wilson in Florida, who was corresponding with other RLS sufferers. Her correspondence soon led to the formation of the Restless Legs Syndrome Foundation.

In contrast to my good fortune, many others I met had been afflicted for long years without finding a physician

1. who knew what they were talking about

2. or could offer any relief, even if the physician was able to diagnose the condition.

A neurologist in Chicago told a female patient, “You have restless legs syndrome but I can’t offer you any help. You could go to the Mayo Clinic.” At the time, her restless legs prevented her from riding to downtown Chicago in a car.

The majority of the sufferers I met, however, had gone from one physician to another, unable to find one who could identify their condition at all. Too often they were left to think—or even told directly—that “it must all be in your head.” During that period, a psychiatrist said, “If primary care doctors knew what restless legs syndrome was, I wouldn’t be receiving all these referrals!”

It was the “Dark Ages” of diagnosis and treatment compared with today. The vast majority of those who first experienced the very strange symptoms of “worms in my legs” or “the fidgets” or similar strange definitions were destined to live in a lonely wilderness of sleep-deprived nights largely filled with aimless walking. Thus, it was very appropriate that “NightWalkers” became the title of the Restless Legs Syndrome Foundation newsletter.

The physicians’ lack of information reflected the state of what was available at the time. That, in turn, revealed the lack of research in the field. The physicians I first sought out could not have known what is now known, because it has only been in the past 15 years that the vast majority of research has taken place!

For instance, there are now two drugs that have been approved by the U.S. Food and Drug Administration (FDA) for the treatment of RLS: ropinirole (Requip) in 2005 and pramipexole (Mirapex) in 2006. In both cases, the drugs were originally developed for the treatment of Parkinson’s disease. Even that was recent, as Requip was approved by the FDA in 1997, and Mirapex was approved in 1998. At that time, the pharmaceutical companies probably were unaware of the potential benefits for RLS patients, nor did they dream of the sales potential that has since been realized.

These treatments provide relief to large numbers of RLS sufferers. The advertisements promoting the sales of the two drugs have created an awareness—among both patients and physicians—that never existed before. But, as I can verify from my own experience, they provide treatment of symptoms, not a cure of the condition.

Today, it is difficult to ignore TV and print advertisements that describe and define what had been described as “the most common disease you never heard of.” Of course, the advertisements are promoting medications, which only provide relief from symptoms.

In time, I did find a second neurologist who had some knowledge of the condition. By this time, I had become active in the Restless Legs Syndrome Foundation. In addition, I discovered the National Center of Sleep Disorders Research at the National Institutes of Health (NIH) and began attending their meetings. While my neurologist readily wrote prescriptions for drugs I had learned might be of help, it soon became apparent that he was principally interested in learning from me what was happening at NIH and what was new in the field.

Presently, my fourth neurologist has my condition quite well stabilized; as long as I consistently take my medications, both at dinnertime and at bedtime, my symptoms are relieved. But if I were to stop the medications, I know my symptoms would return: I have not been cured!

Fortunately, this book presents the latest hope in that regard, a hope that was far beyond our wildest dreams only a few short years ago. While the story of RLS has unfolded, the editors and many of the contributors have become good friends. I wish to take this opportunity to express my sincere gratitude to each of them, both for their friendship and their dedication to the improvement of the lives of the thousands, and possibly millions, of us who suffer from RLS.

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