After an MS Misdiagnosis, One Woman Is Still Searching for Answers

Learning that an MS diagnosis may be wrong can bring relief, but it can also leave a person without an explanation for symptoms or a clear plan for care. Michele Vincent, a 55-year-old social worker from Youngsville, Louisiana, says she spent 11 years being treated for multiple sclerosis before specialists concluded in September 2026 that the diagnosis did not fit. She still has no confirmed alternative diagnosis.

Vincent’s experience has taken on new meaning for her since Christina Applegate spoke publicly about learning, after five years of treatment, that she had been misdiagnosed with MS. Applegate announced her MS diagnosis in August 2021 and became known for describing how the condition affected her health and work. Her account of the uncertainty after a diagnosis changed prompted Vincent to share her own story. She hopes that speaking openly may help someone else feel less alone.

MS is a chronic disease of the central nervous system. The source article cites an estimate that as many as one in five people diagnosed with MS may not have the condition. That figure gives context to Vincent’s experience, but it doesn’t establish what is causing her symptoms. Her case also shows how a diagnosis can become woven into treatment, finances, relationships and a person’s sense of identity.

A diagnosis that once seemed to fit

Vincent says the first sign came in 2015, when she woke up with numb legs. The sensation returned about an hour later, but she contacted her primary care physician that day. He suspected MS and referred her to a neurologist, who sent her on to another specialist.

An MRI showed brain lesions. Vincent also had two spinal taps, but both samples were contaminated, leaving open the possibility that their results were inaccurate. Rather than repeat the procedure at that point, her neurologist referred her to an MS specialist. The specialist reviewed the images and told Vincent that the lesions met the Dawson’s fingers criteria, a pattern associated with MS. The source article cites research estimating that this feature appears in about 78% to 93% of people with MS.

Vincent had gone to the appointment alone. She was single, lived by herself and wanted to remain independent; she hadn’t told family or friends about the visit. She recalls realizing on the drive home that she had MS. The diagnosis came on Mardi Gras Day in February 2015.

She stayed with that specialist for seven or eight years and tried several MS medications: Tecfidera, Ocrevus, Tysabri, Lemtrada and Kesimpta. After taking Tysabri, she had a severe adverse reaction and was hospitalized. She says she trusted her first specialist, who spent time with her and carefully asked about her symptoms. The treatment history and that trust made it harder to process the later change in diagnosis.

Why her specialists reconsidered

When her first MS specialist moved in 2022, Vincent began seeing another specialist. In 2023, that doctor said the evidence wasn’t coming together neatly. Vincent’s first specialist had diagnosed relapsing-remitting MS; the new specialist initially thought primary progressive MS was possible. These are two common forms of the disease, but the doctor also ordered more laboratory work, MRIs and other tests.

At an appointment on October 3, 2025, the specialist explained that Vincent’s presentation looked atypical. The doctor pointed out that her lesions were in locations different from those usually associated with MS. A comparison with an MRI from the previous year also showed brain shrinkage that the specialist said was occurring rapidly for Vincent’s age and was not a typical MS finding.

The specialist didn’t rule out MS at that visit. She wanted Vincent to see a movement disorder specialist and a geneticist to investigate other possibilities. Vincent says she appeared calm in the room but felt frightened. Afterward, she had a panic attack and spent much of the weekend crying and sleeping. Since then, she says, anxiety has been a constant part of the experience.

For about a year, the working view shifted back and forth between atypical MS and no MS. In September 2026, a special MRI protocol looked for the central vein sign: a small vein running through a brain lesion, which can strongly point toward MS when present. That scan led her clinicians to remove the MS diagnosis. It did not reveal what was behind her symptoms.

Testing has narrowed possibilities, not found an answer

Doctors have investigated several possible explanations. Because Vincent has sarcoidosis of the liver, specialists initially suspected neurosarcoidosis, a condition in which clusters of inflammatory cells develop in the central nervous system. It can resemble MS. A later spinal tap was not contaminated, and its results strongly argued against neurosarcoidosis.

Vincent also has a family history of Parkinson’s disease and Lewy body dementia. Her mother and both of her mother’s siblings had Parkinson’s and Lewy body dementia, and her paternal grandfather had Parkinson’s. Testing for Parkinson’s and other neurovascular disorders was negative. Whole exome sequencing, which examines the parts of DNA that code for proteins, also came back normal.

Her primary neurologist has now referred her to the Undiagnosed Diseases Center at Baylor College of Medicine, though Vincent still needs to be accepted. She has also had proband-only whole genome sequencing, a broader test that reads nearly all of a person’s DNA and may help investigate complex, unexplained health problems. Her geneticist described it as the most extensive genetic test available to them and said it might be the last tool she could offer.

Vincent is waiting for those results while managing symptoms that include numbness, spasticity, cognitive fog, fatigue, optic neuritis, stuttering, trouble finding words, depression and anxiety. She says one recent visit with her neurologist ended with the doctor telling her she had no further tests to offer at that point. A referral and a new test offer a possible next step, but neither guarantees an answer.

The costs of losing a diagnosis

The emotional response to being undiagnosed hasn’t been simple relief. Vincent says she mourned when she was first told she had MS and never expected to grieve when the diagnosis was taken away. When symptoms have no name, she says, it can be harder to explain what is happening or to know what care might help.

She has also felt hurt by comments such as “That’s great news” and “At least it’s not the big MS.” For Vincent, the absence of an MS diagnosis doesn’t mean the symptoms have disappeared. It means a label and its familiar treatment pathway are gone while the underlying problem remains unclear.

At first, she was angry with the neurologist who diagnosed her. Friends helped her pause, and she has come to accept that doctors can make mistakes. Still, she thinks about the consequences. She says chronic dry mouth from MS medications led to about $60,000 in dental work two years ago. Her siblings and friends helped cover the bill through a fundraising page.

There are continuing questions about insurance costs, too. Vincent had arranged her infusion therapy early in each year so copay assistance would count toward her deductible. That meant her appointments and medicines were covered for the rest of the year once she met her out-of-pocket limit. With a new $5,000 deductible beginning January 1, 2027, she doesn’t know how she’ll pay for further testing and symptom management. She has already withdrawn money from retirement savings.

When she was diagnosed with MS, Vincent also began speaking up for the MS community. As a social worker, she had been referred patients with MS because she understood the condition from personal experience. She appeared in advocacy videos for Bio News, which sponsors Multiple Sclerosis News Today, and added herself to an MS mental health provider directory. Now she worries she has misrepresented herself, even though she says she believed the diagnosis at the time.

Vincent has repeatedly asked her doctors whether her symptoms could be psychosomatic. Her neurologist told her that thoughts cannot produce the brain lesions or shrinkage seen on her scans. The reassurance matters to Vincent: a diagnosis can be uncertain while a person’s symptoms and test findings remain real.

Speaking up while the search continues

For a long time, Vincent kept the change in diagnosis to herself. She had hoped to wait until doctors found another explanation, then tell people both that she’d been misdiagnosed and what condition she had instead. Without that second part, she worried her illness might seem less visible or believable. Keeping the uncertainty private, however, left her feeling isolated and exhausted.

Listening to Applegate discuss her experience on a podcast moved Vincent to tears. She recognized the frustration and emotional strain in Applegate’s account, and the decision to speak openly helped Vincent tell her family and friends what was happening. Her siblings have remained supportive, and hearing the podcast together has led to more conversations about MS and misdiagnosis.

Vincent’s story doesn’t yet point to a single cause or resolution. It does show why a changed diagnosis can require time, additional testing and continued care for symptoms, as well as practical support while answers remain out of reach. For people facing a similar shift, her account offers a clear reminder: uncertainty about the label doesn’t erase what someone is experiencing, and talking with a care team about symptoms, testing and costs can be part of navigating what comes next.