"Dad, have you seen the video of this cheerleader? All of my friends have and they don’t want to get vaccinated if this could happen to them. It seems strange that she can do some things and not other things. Is this for real?"
That’s the response John Santa, M.D. and Director of the Consumer Reports Health Ratings Center, got from his 23-year old son recently after being reminded to get the two (seasonal and H1N1) flu vaccines. The concern echoed those expressed by many others after the story was released by FoxNews in mid-October. It reported that a Washington Redskins cheerleader, Desiree Jennings, was diagnosed with a rare neurological disorder called dystonia alleged to be caused by a severe reaction to the seasonal flu shot. The online story, published October 13th, described that "Desiree now has difficulty speaking, walking, and even eating. During an interview with FOX 5, she had several seizures. The effects are irreversible."
Over the past two weeks Desiree’s story has been picked up by quite a number of other news outlets and blogs and featured on the home page of Generation Rescue, Jenny McCarthy and Jim Carrey's Autism Organization, with the title "Redskin Cheerleader Disabled by Flu Vaccine".
But this is misleading. Dystonia is a rare movement disorder in which prolonged muscle contractions cause twisting and repetitive movements or abnormal posturing. These involuntary movements may affect a single muscle or a group of muscles in the arms, legs, neck or the entire body. But neurologists all over the country are commenting on professional listservs, saying that Desiree’s video doesn't look like dystonia at all, but rather is likely to be a psychogenic movement disorder, that is, a condition thought to have a psychological origin, and for which there is no physical explanation.
"Without examining the patient, a neurologist cannot make a definitive diagnosis. But after viewing the multiple videotapes and discussing them with other dystonia experts there are many features that are not consistent with the diagnosis of true dystonia, but are much more in keeping with what is called a psychogenic movement disorder" he said. He further explains that several things about her case just don’t fit the diagnosis of dystonia:
- It was very sudden in onset—true dystonia has a slow onset and, if it progresses, does so very gradually
- The movements are not characteristic of dystonia or, for that matter, of any other known movement disorder
- Her speech has an unusual staccato pattern which is not seen in any neurological disorder and the degree of impairment is quite inconsistent
- The return of all normal motor behavior and speech when running forward is not consistent with true dystonia
- The report of additional neurological problems such as paralysis of the tongue, but normal speech while running is not consistent with true neurological problems
While physicians, including Dr. Weiner, are generally reluctant to discuss cases of patients that they haven’t personally examined, Dr. Weiner spoke out because of the ramifications to consumers. “This has nothing to do with the flu vaccine. There are no previously reported cases of dystonia following the flu vaccine. This is a public health policy issue because people are being scared away from getting vaccinated,” he said.
CR's take: Don't let your health-care decisions be influenced by a single anecdote, use the evidence instead. If you're in a risk group for complications from the flu, follow CDC guidelines and get the vaccine. Read more on flu myths you can ignore.
—Orly Avitzur, medical adviser