Christina Applegate was in tears last week on the podcast she co-hosts. She had news. After five years of numbness and pain, and a diagnosis of multiple sclerosis in 2021, her doctor ran new tests. She doesn't have MS. She never did. “I haven't gotten better,” she said. She's back at square one, and she still doesn't know what's wrong. Sara Ashley O'Brien told the story in the Journal's Wellness column on Monday.
Her case isn't rare. One meta-analysis, a study that pools other studies, combined six of them. It put the MS misdiagnosis rate at an estimated 15%. Other studies land higher or lower. The reason is simple. There's no single blood test for MS. Doctors look for a mix of symptoms and the lesions MS leaves on a brain and spine MRI. If that picture isn't clear, they check spinal fluid and other clues. Nearly one million Americans have MS, and women are the most at risk.
Plenty of other things look like MS. Migraines, blood-vessel disease, fibromyalgia, lupus and rare immune or genetic conditions can all mimic it. The treatments are different. So a person with the wrong label gets drugs for a disease she doesn't have. She also loses years she could've spent finding the real one. Dr. Tanuja Chitnis of Mass General Brigham told the Journal the fine print is exclusion. Before you call it MS, you rule out every other reasonable cause.
The label has a price
Dr. Michael Kornberg of Johns Hopkins made a point that goes past medicine. A label brings some comfort, he said. You know what's going on with your body. Take it away after five years, and that's hard to bear. Applegate's news may push other patients to question their own diagnoses. That's not a bad thing.
Our read
We file this under Health Costs, with a side of Insurance (M11). A big diagnosis changes the money plan fast. It can set off years of expensive drugs and scans. It can start a disability claim at work or on a private policy. It can change a life insurance application, a long-term care policy and a retirement date. Every one of those decisions rests on the label being right. For MS, an estimated 15% of the time it isn't. So when a diagnosis is going to steer big money, ask for a second opinion first. Ask a specialist at a different hospital, before the first expensive prescription. And ask again every few years. Tests improve. Applegate's doctor got there with newer tests.
The one thing in your plan this touches is your disability coverage. Pull the policy and read how it defines a disability and what a changed diagnosis does to a claim. The check this week is a phone call. If anyone in your house carries a lifelong diagnosis that drives spending, ask that doctor when it was last re-evaluated. Bring the answer to your next review. We'd rather fix the roof while it's sunny.