A Prairie Village woman is suing Saint Luke’s after the hospital system allegedly failed to diagnose her with multiple sclerosis for the past decade.
Sara Allison in early November filed a lawsuit against the hospital system and two Saint Luke’s Neurology physicians — Charles Weinstein and Sarah Gibbons — who allegedly “dismissed” Allison’s decade-long concerns leading to a missed multiple sclerosis diagnosis.
Allison told the Post in an interview that she feels she was “medically gaslighted” in many ways. She said her “life was turned upside down by these doctors’ decisions.”
“These decisions, I feel, changed the trajectory of my life,” Allison said. “There are so many pieces of that, which are hard to swallow, to process.”
In an email statement to the Post, a Saint Luke’s representative said the hospital system is unable to comment on pending litigation, but that it is proud of the “exceptional care” its physicians provide.
Neurologists diagnosed Allison with migraines, lawsuit says
Allison first went to see Weinstein in 2007 for headaches.
Five years later, she went to Weinstein to address nearly a dozen new neurological symptoms — trouble speaking, vision changes, confusion, tremor, muscle spasms, dizziness, weakness when standing and slower cognitive functioning, according to the lawsuit.
Weinstein told Allison these symptoms were due to migraines, specific medications, “and other diseases which do not have a neurological component,” the lawsuit reads.
During an unrelated stint at Saint Luke’s in 2012, Allison underwent a magnetic resonance imaging (MRI).
That unrelated MRI report noted a “demyelinating disease” — of which multiple sclerosis is a type — as a potential cause of white spots in her brain. It also suggested Allison have another MRI done in six months to monitor the white spots.
Although Weinstein told Allison he thought another MRI was unnecessary, he agreed to a second one. The report from the second MRI, taken on Nov. 1, 2012, identified multiple white spots on her brain that were noted as unusual for Allison’s age and listed a demyelinating disease as a possible cause.
Despite Allison’s concerns about the white spots and her new symptoms and questions about whether multiple sclerosis was a potential cause, Weinstein interpreted the results of the second MRI differently, instead identifying the spots as the result of migraines. He said “a demyelinating disease such as MS was not a possibility,” according to the lawsuit.
“There was this sort of unequivocal commitment to the migraine diagnosis, that being the reason behind these spots,” Allison told the Post. “It almost felt like the demyelination was never really considered — I can’t say whether they did or didn’t — but it felt like it wasn’t being considered. It felt like my concerns were dismissed in the sense that it wasn’t even possible.”
Defendants continually ‘dismissed’ Allison’s concerns of MS
Weinstein disagreed with Allison that the white spots from the November 2012 MRI could be either “demyelinating [or] multiple sclerosis in nature and failed to consider anything other than migraine as the cause,” the lawsuit reads.
From 2012 to 2016, Weinstein refused to authorize any additional MRI studies, according to the lawsuit.
Allison was placed in another physician’s care, the third named defendant, Gibbons, in July 2019. A year later, one of Gibbons’ nurse practitioners ordered a second MRI to be run by the neurology practice on Allison. Part of the goal of the second MRI was to review changes to how her headaches were manifesting.
Weinstein retired in 2016 or 2017, but Allison said she received further treatment from him through 2021 because her new physician and nurse practitioner both took maternity leave during that time period.
An MRI in 2020 showed that the white spots from the November 2012 MRI had progressed. Demyelination was again listed in the report, but the nurse practitioner said the white spots were consistent with migraines.
Allison said she didn’t think to get a second opinion because she had trusted Saint Luke’s Neurology for nearly 15 years.
“I thought, I’m in front of a neurologist that I trust, he’ll know, she’ll know, if this is what it is, they’re telling me it’s not what it is, so it must not be what it is,” Allison said. “I’ll keep asking about it, but ultimately I’m going to listen to them.”
Allison treated as migraine patient until August 2022
A decade after Allison initially brought forward concerns and questions about whether she might have multiple sclerosis, Gibbons decided to formally consider it as a possibility in August 2022, according to the lawsuit.
Two months later, Gibbons reversed course, telling Allison “there was still no current evidence that she had MS based on the testing,” the lawsuit reads. That same day in October 2022, Gibbons encouraged Allison to get a second opinion somewhere else.
Allison said she felt blindsided when the opinion changed from “the white spots are fine” to “maybe the white spots could be” multiple sclerosis because that’s not what she’d heard for the past 10 years.
“I felt irate, because I did what I was supposed to do,” Allison said. “I went to my specialist that I trusted and I shared my concerns, and they still missed it.”
Two days after a telemedicine visit regarding vision and balance issues, a third MRI was conducted to specifically review Allison’s white spots for multiple sclerosis.
The August 2022 MRI showed the white spots grew over the two-year period as well as dead brain tissue. Those results “are indicators of MS and/or demyelinating disease and are further signs that the disease had been progressing over time,” the lawsuit reads.
Gibbons also ran a lumbar puncture in September 2022 as one way to determine a multiple sclerosis or demyelinating disease. However, the lawsuit said Gibbons “failed to order the entire standard testing procedure for” multiple sclerosis.
Read the entire 16-page lawsuit below.
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Open in new tab A different practice diagnosed Allison with MS
Allison said her new physician strongly suspected she had multiple sclerosis early on. She said her new neurologist “left no stone unturned” and ultimately diagnosed her with multiple sclerosis.
The confirmed multiple sclerosis diagnosis made sense, Allison said, but left her with questions about what it meant for her life and 10 years of improper treatment.
Early and aggressive treatment is the norm for multiple sclerosis to prevent disability, Allison said. Currently, Allison said she is taking one of the top, most efficacious drugs, participating in physical and emotional therapy.
She also stopped taking a drug she was taking for a rheumatological condition, which may have been making the multiple sclerosis worse.
Although the plan is in place now, Allison said, she doesn’t know what life would look like had she gone to her current neurologist 10 years ago.
“We’re behind, we’re 10 years behind,” Allison said. “I can’t undo 10 years of brain progression and disease activity.”
Allison encourages patients to ‘be diligent’
Allison said she finds it difficult to trust physicians after years of her concerns about multiple sclerosis being dismissed, only to find out they were valid.
“It makes you look at every health issue you have with more detail and more research and more diligence,” Allison said.
While multiple sclerosis symptoms can be non-specific, Allison said, the top three she wants the public to know are weakness, fatigue and cognitive changes.
Now, Allison said she is working to find the balance between asking her physician questions and respecting their professional opinion.
If a patient finds themselves wanting an exam or test done that their physician refuses to conduct, then Allison encourages that patient to find a physician who will run the exam or test.
She hopes people hearing her story are more diligent about reporting their medical history and asking questions — but she also implores physicians to listen to their patients.
“I feel like, in many ways, I was medically gaslighted and that’s discomforting,” Allison said. “Especially when you think other people might feel the same.”
Saint Luke’s says it is ‘deeply committed’ to quality care
- Lindsey Stich, the director of media relations-broadcasting for Saint Luke’s Health System, said the hospital is “deeply committed to providing the highest level of care to every patient.”
- Stich said the hospital is unable to comment on pending litigation.
- “We can say we are proud of the exceptional care we provide and have the utmost confidence in our physicians who dedicate their lives to serving our patients,” Stich said.
