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Misdiagnosing multiple sclerosis is a significant problem, and one that many people can appreciate, including those with the disease or those who are living with the uncertainty of what they really have. In a series of upcoming articles, I will explore some of the challenges associated with getting an accurate diagnosis of the disease and differentiating it from others (“cousins”) with similar symptoms and signs.
For now, however, a research team at Oregon Health & Science University (OHSU) and the Portland Veterans Affairs Medical Center has named at least one reason multiple sclerosis is misdiagnosed: They claim clinicians rely too heavily on brain scans. In fact, the authors estimated that among the 122 multiple sclerosis specialists they questioned:
The clinicians saw about 600 patients in one year who had been given an incorrect diagnosis of multiple sclerosis by another physician before they saw the specialist
About 280 of the misdiagnosed individuals were taking a disease-modifying drug for multiple sclerosis, such as fingolimod (Gilenya), dimethyl fumarate (Tecfidera), and natalizumab (Tysabri), among others. Such drugs can cause significant adverse effects and cost upwards of more than $3,000 per month. So not only does a misdiagnosis result in the use of drugs that are inappropriate for the patient, it also wastes valuable time and money and has a negative impact on quality of life, physically and emotionally.
Some of the misdiagnosed patients had had the wrong diagnosis for years, which means they were exposed to medications and other treatments that could have been harmful.
According to the study’s lead author, Dr. Andrew Solomon, formerly of OHSU but now at the University of Vermont College of Medicine, their findings indicate that clinicians rely too heavily on MRI findings when making a diagnosis, which then results in a misdiagnosis. Previous research also has suggested that the majority of individuals referred for possible multiple sclerosis actually because of an abnormal MRI actually had another neurological disorder.
Disheartening finding Most of the responding specialists (66.4%) said that telling patients with a long-standingdiagnosis of multiple sclerosis that they had been misdiagnosed was more challenging than telling individuals about a new diagnosis of MS. But here is the disheartening part.
Nearly 14 percent of the responding specialists said they sometimes had elected not to tell patients whom they believed to have been misdiagnosed about their suspicions. Among the reasons given for nondisclosure were fear of psychological harm from revealing the misdiagnosis to the fact that the patients were not taking disease-modifying drugs and thus were not experiencing related side effects.
“Cousins” of multiple sclerosis What are the other possibilities that should be considered when clinicians are attempting a diagnosis that may lead to multiple sclerosis? The mnemonic VITAMINS is frequently used to categorize the different diseases or conditions that have signs and symptoms similar to those of MS: Vascular, Infectious, Traumatic, Autoimmune, Metabolic/Toxic, Idiopathic/Genetic, Neoplastic, and Psychiatric.
A sample of the conditions doctors should consider include multiple lacunar infarcts, Lyme disease, syphilis, neuromyelitis optica, Behcet syndrome, vitamin B12 deficiency, Friedreich ataxia, traverse myelitis central nervous system lymphoma, and conversion disorder. The likelihood that your doctor will consider any of these or other diseases depends on your personal and family health history, current signs and symptoms, and the results of various tests.