Multiple sclerosis (MS) is a disease in which the body's immune system attacks myelin, the protective coating surrounding nerves in the brain and spinal cord. There is no definitive test for MS, so doctors diagnose it according to symptoms and MRI scans. But a troubling new study finds that MS diagnosis is often inaccurate.
Researchers surveyed 122 doctors who specialize in multiple sclerosis and found that more than 95% of them had seen at least one patient within the past year who had received a diagnosis of MS from another doctor, but whom the specialist "strongly felt did not in fact have MS." In all, the group had seen almost 600 MS patients within the past year who they strongly believed had been misdiagnosed. Many of those misdiagnosed patients had begun MS medications and treatments, which can have potentially serious side effects and can cost $40,000 per year.
Some of the conditions the doctors believed the misdiagnosed patients may have had instead of MS: small vessel ischemic disease (which is often related to hypertension), migraine, psychological disorders, neuromyelitis optica, and fibromyalgia.
Now, if you or a relative has been diagnosed with MS, this study does not mean you should question it. "There are many cases of MS that are very typical and not challenging to diagnose, which means diagnostic criteria are validated by specific symptoms combined with particular MRI abnormalities," says study author Andrew Soloman, MD, who worked at Oregon Health and Sciences University and the Portland Veterans Affairs Medical Center when he conducted the study, and now is now an assistant professor at the University of Vermont College of Medicine and is a member of the University of Vermont Medical Group Neurology Service at Fletcher Allen Health Care. "But sometimes doctors see changes on an MRI that could be caused by something else, chronic hypertension or migraine for example, and even if the symptoms aren't quite right they might diagnose MS." In that case a better plan, he says, would be to monitor symptoms over time instead of making a diagnosis and starting therapy. "Our finding that misdiagnosis of MS was this common has significant consequences for patients and for our health care system," says Soloman.
Even more troubling, about one in seven of the MS specialists surveyed said that they had sometimes chosen not to inform the patients that their initial diagnosis was inaccurate. Some of the reasons given for not informing the patients: The doctors thought that telling the patients the truth could harm them psychologically and they worried that a change in diagnosis could result in the patient losing needed social support or disability benefits. Another factor could be simply the awkwardness of telling patients that they've been misdiagnosed: A majority of doctors surveyed said that informing a patient long thought to have MS that he or she was likely misdiagnosed was actually more difficult than giving a patient a new, accurate MS diagnosis.
This seems strange, because from the patient's perspective I would think being told that you do not, after all, have a degenerative neurological condition would be fantastic news and a huge relief. But keep in mind that these patients suffer from a variety of symptoms, and when you don't feel good it's usually a strange comfort to receive a diagnosis, even an unpleasant one. By taking away their MS diagnosis these doctors would be sending their patients back to that purgatory where you know your body isn't working right but you don't know why.
One take-away from this research is that if you've been diagnosed with MS, definitely get a second opinion, ideally with a multiple sclerosis specialist. Although general neurologists and even primary care doctors might make an MS diagnosis, a specialist is more likely to be able to definitively determine whether you have the disease.