The Medication Risks of a Multiple Sclerosis Misdiagnosis

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<p>Christina Applegate, who became a powerful activist for multiple sclerosis (MS) awareness after her 2021 diagnosis, now says she was <a href="https://people.com/christina-applegate-ms-misdiagnosis-still-your-warrior-12195531">misdiagnosed</a> and does not have the disease. Her experience highlights not only how difficult MS can be to diagnose, but also the potential consequences of getting it wrong, including exposure to medications that carry significant side effects and risks, while the actual cause of a patient's symptoms goes untreated. </p>
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<p>The actress shared details on her podcast “<a href="https://www.messythepodcast.com/">MeSsy</a>,” which she co-hosts with actress Jamie-Lynn Sigler, who has lived with MS for <a href="https://www.self.com/story/jamie-lynn-sigler-ms-diagnosis">more than two decades</a>. Applegate said her doctor told her, “Congratulations, you don’t have MS.”</p>
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<p>“You don’t get misdiagnosed and then all of a sudden I’m better,” Applegate said. “I haven’t gotten better.” She said she still has “every symptom of someone with MS” and doesn’t know what is causing these crushing symptoms. </p>
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<p>MS is a <a href="https://www.ninds.nih.gov/health-information/disorders/multiple-sclerosis-ms">chronic, progressive disease</a> in which the immune system attacks the brain, spinal cord, and optic nerves. Because the disease targets the nervous system, symptoms can vary widely and include numbness, vision changes, dizziness, balance problems, and fatigue.</p>
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<h2 class="wp-block-heading">The Risks of Taking MS Medications You Don't Need</h2>
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<p>“Diagnosing MS is often like putting together a puzzle,” says <a href="https://www.nationalmssociety.org/about-the-society/who-we-are/leadership/executive-leadership-team">Bruce Bebo, Ph.D</a>., chief research and medical affairs officer at the National Multiple Sclerosis Society. And the stakes are high. Drugs used to <a href="https://www.drugs.com/pro/teriflunomide.html">slow MS progression</a> can cause side effects, including fatigue, gastrointestinal problems, high blood pressure, headaches, elevated liver enzymes, and increased susceptibility to infections. </p>
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<p>“An incorrect MS diagnosis can have meaningful consequences,” notes Dr. Bebo. “It may expose someone to treatments they do not need and the potential risks associated with those therapies, while delaying identification and treatment of the condition that is actually causing their symptoms.”</p>
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<h2 class="wp-block-heading">Why Is MS Misdiagnosed?</h2>
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<p>N<a href="https://www.ninds.nih.gov/health-information/disorders/multiple-sclerosis-ms">o single test</a> can definitively diagnose MS. Instead, doctors weigh a patient’s history, a neurological exam, MRI scans and, when appropriate, spinal fluid tests.</p>
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<p><a href="https://annunavani.com/about/">Annu Navani, M.D</a>., a regenerative medicine specialist and chief medical officer of Reve Health Institute, said the goal is to show damage in more than one part of the nervous system, at more than one point in time, while ruling out other causes. Spinal fluid tests can reveal immune proteins called oligoclonal bands. They strongly support an MS diagnosis but aren’t confirmation on their own, she said.</p>
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<p>“MS misdiagnosis is a well-documented clinical problem,” says Dr. Navani. A <a href="https://journals.sagepub.com/doi/10.1177/13524585241274527">2024 meta-analysis</a> of six studies covering 1,621 people found a 15% misdiagnosis rate, and Dr. Bebo notes that some <a href="https://www.msard-journal.com/article/S2211-0348(19)30048-3/abstract">specialty-center studies report</a> 15% to 20%, but those centers often see the most complex cases, so no single percentage should be assumed to apply to everyone.</p>
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<p>One reason MS can be so difficult to diagnose is that several other conditions can produce similar symptoms.</p>
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<p>“Multiple sclerosis has numerous clinical and radiological mimics, ranging from relatively common disorders to less frequent but serious neurological diseases,” says Dr. Navani. She points to migraine, stroke, vitamin B12 deficiency, neck-related spinal problems, and other autoimmune and infectious neurological conditions. Dr. Bebo lists neuromyelitis optica spectrum disorder (a rare autoimmune disease that primarily affects the optic nerves and spinal cord), MOG antibody disease (an autoimmune condition that causes inflammation in the brain, spinal cord, and optic nerves) and vascular conditions. </p>
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<h2 class="wp-block-heading">How to Work Towards an Accurate MS Diagnosis</h2>
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<p>But experts say there is reason for hope. The <a href="https://www.nationalmssociety.org/news-and-magazine/momentum-magazine/research-and-science/updated-diagnostic-criteria">2024 McDonald Diagnostic Criteria</a>, the standard guide for diagnosing MS, which the National MS Society helped revise, has incorporated new evidence that can speed diagnosis — and make it more precise. </p>
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<p>For example, the new criteria contains more diagnostic clues to help point doctors in the right direction, including optic nerve involvement, advanced MRI findings, and a new spinal fluid marker. </p>
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<p>So what should people who aren’t sure if they’re dealing with MS or another issue do? Dr. Navani recommends seeing a neurologist who specializes in MS or neuroimmunology, particularly if someone’s original diagnosis rested mostly on nonspecific symptoms or MRI findings. She says patients should request copies of their MRI images, not just the radiology reports, along with exam findings, spinal fluid results and prior lab work, and should feel free to get a second opinion. Sudden vision loss, new weakness or rapidly worsening symptoms warrant urgent care rather than waiting for a routine appointment.</p>
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<p>Resources are available for people diagnosed with MS, Dr. Bebo adds. The National MS Society’s <a href="https://www.nationalmssociety.org/resources/get-support/ms-navigator?utm_source=sld&utm_medium=semg&utm_campaign=drefy27_aab_eg_pros&utm_content=sem_msnav&referrer=sld-drefy27-aab-eg-pros-semg-sem-msnav&gad_source=1&gad_campaignid=24307863535&gbraid=0AAAAA95NLvB-leOnYmSrUC3GO9jeeX2CR&gclid=CjwKCAjwxeHWBhBPEiwAiqtQ-QpoUXgXbz_80lr6j9pcYzZmHQIrawFlj2TjKN4UuyarDSVm_Z_c7hoCcoYQAvD_BwE">MS Navigator program</a> connects people with information, resources, and guidance. </p>
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<p>“Whether the answer is ultimately MS or something else,” says Dr. Bebo, “people deserve an accurate diagnosis and a clear explanation.” </p>
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<h2 class="wp-block-heading"><strong>Disclosures</strong></h2>
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<p>The National MS Society, which receives funding from pharmaceutical companies, says industry contributions account <a href="https://www.nationalmssociety.org/es/about-the-society/who-we-are/financials/sources-of-support">for less than 5% of the funding</a> supporting its programs.</p>
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