When we experience something abnormal with our bodies, we go to the doctor, who may tell us we need to undergo testing to get to the root of the problem. But, what happens when no single test can determine what exactly is going on with you? Nearly one in five patients with an established diagnosis of multiple sclerosis (MS) are misdiagnosed, according to a 2019 study led by Cedars-Sinai.
“Many physicians think diagnosing MS is simple,” Marwa Kaisey, MD, one of the study’s lead authors, says. “We need more education on why it’s not and how people get the diagnosis wrong.”
Kaisey and her colleague Omar Al-Louzi, MD, are both MS specialists at Cedars-Sinai. In collaboration with researchers and experts across the medical center, the pair of neurologists are at the forefront of developing new tools and techniques to improve the efficiency and accuracy of multiple sclerosis diagnoses.
Ever had a symptom that you thought you knew the cause of only for it to turn out to be something else? This is what it’s like for multiple sclerosis patients who often experience numbness, tingling, pain, fatigue, and heat sensitivity, which can also be a sign of several other conditions.
“A big problem in MS is we have a lot of tools that detect everyone who may have MS but also lump in people with other conditions that are not MS,” Kaisey shares. “We don’t yet have tools that will identify only MS. We have sensitive markers but not specific markers to distinguish MS from other diagnoses.”
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The danger of misdiagnosis
To diagnose multiple sclerosis, your doctor will need to take a thorough looked at your medical history. This will help them understand your symptoms—particularly whether they are experienced as discrete attacks or are slowly progressing over time. When giving doctors your medical history, remember all the symptoms you are experiencing. This includes when you first started experiencing symptoms, where you started experiencing symptoms, what makes your symptoms better or worse as well as a complete list of your medical and social history. Had a previous surgery? Smoke or drink? All of this information will help doctors get to the root of your problem.
Once your doctor has a clear picture of your symptoms, you will undergo a physical exam. This helps doctors understand inflammation in the brain, spinal cord and optic nerves. An MRI is also used to look for the presence of lesions in particular compartments of the brain and spinal cord.
While these procedures can tell doctors a lot about the state of your health, they can also be confused with many neurological conditions such as migraine, cerebral small vessel disease, systemic lupus erythematosus, or autoimmune conditions like neuromyelitis optica or myelin oligodendrocyte glycoprotein antibody-associated disease. What do these conditions have in common? They all leave lesions on the brain, which can present similarly on an MRI.
“People often come into our clinic with an abnormal brain MRI, and no one knows what’s causing their lesions,” Kaisey says.
A misdiagnosis can have critical consequences on your health, which is why the Cedars MS and Neuroimmunology program, led by Nancy Sicotte, MD, has been focused on developing and utilizing novel diagnostic biomarkers.
“Sometimes, patients who are misdiagnosed with MS are placed on MS therapies that alter or suppress the immune system,” Sicotte shares. “This can put patients who don’t have MS at a higher risk of side effects, including infection.” This can be particularly dangerous for