Drugs, Dollars & Diagnosis

Every few years, it seems, there’s a new diagnosis for a controversial disease or condition.

Are ADHD, restless leg syndrome (RLS) and fibromyalgia, to name a few disorders du jour, imaginary, or do these labels identify conditions that are all too real for people suffering from them, with symptoms ranging from irritating to debilitating?

The controversy is fueled by the observation that there seems to be a money trail attached to some of the attention for the most fashionable disorders. As pharmaceutical company critic, psychiatrist and author David Healy notes, “when antidepressants were on-patent and making money, we heard a lot about depression; now that mood stabilizers are making money, we hear a lot about [bipolar].”

Restless leg syndrome: for real?

Rush Limbaugh and Ralph Nader make strange bedfellows, but both have expressed skepticism about restless legs syndrome, a progressive neurological disorder in which people feel an often-irresistible urge to move their legs. The condition worsens at night, disturbing sleep.

Some critics go as far as to claim that RLS doesn’t even exist, but was made up by pharmaceutical companies—with the collusion of doctors, patient advocates and the FDA—in order to sell drugs.

When Janice Hoffman, chair of the RLS Foundation, talks about her experience of the disease, however, her voice breaks. Although she has had a successful career as a senior vice president of Wealth Management at Smith Barney, and before that as a music teacher, she often could not sit still for meetings or concerts and at times has walked for hours at night.

“It feels like there’s a sack of worms in my legs and they are all moving,” she says, “You get an almost panicky feeling and do feel like you’re a bit crazy. You can’t overestimate the havoc this wreaks on work and relationships.

“If you are going to cry ‘Wolf!’” she adds, “Do you honestly think you'd waste it on RLS symptoms? Don't you think you'd come up with something a little more believable?”

Before she read a Johns Hopkins newsletter article on the subject in 1993 and was diagnosed and treated, Hoffman was increasingly sleep-deprived. Walking and working were the only things that stopped the awful sensations.

She still has to arrange her life—aisle seats in the concert hall and on planes, contingencies for meetings, explanations for people who confront her about “poor concert decorum”—to deal with it.