The Patient’s Perspective

Published on 12/04/2015 by admin

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Last modified 12/04/2015

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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.

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