Approximately 2.3 million people worldwide are thought to have multiple sclerosis (MS), according to the National Multiple Sclerosis Society.
But what if many of those people don’t actually have MS?
We get a lot of patients who have been diagnosed with MS and we do an analysis and find that some don’t actually have MS.
There is no standard test to identify and diagnose MS, a neurologic disease that attacks the central nervous system. Symptoms often overlap with other conditions, such as stroke, migraines, and vitamin B12 deficiency, making it difficult to diagnose correctly.
What are you studying?
Dr. Kaisey: I’m studying the misdiagnosis of MS, a condition that attacks the brain and the spinal cord for reasons we still don’t understand. It can cause blindness, paralysis, and cognitive issues. It’s a terrible disease. The good news is we have many treatments for it, but it’s hard to diagnose accurately.
The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions. You have to rule out any other diagnoses, and people get it wrong all the time. It’s not a perfect science.
Why are you studying this?
Dr. Kaisey: We get a lot of patients who have been diagnosed with MS and we do an analysis and find that some don’t actually have MS. Some of them have been getting treatment for years and not being treated for what they actually do have. The first part of my study was to determine how often this is happening.
I looked at almost 400 patients from 2 MS clinics and found that more than 1 in 6 patients who have been told they have MS don’t actually have it. These patients combined had received 110 years of medication for a condition they didn’t have. This isn’t any one doctor misdiagnosing these patients; it was actually a different doctor each time.
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What are you hoping to achieve with your research?
Dr. Kaisey: My goal is to make is easier to diagnose MS correctly. We already know this is a problem from the first part of my study. Now in the next phase, we’re hoping to develop an MRI tool that can help with diagnosis.
In MS patients, lesions form in the brain that show up as white spots on an MRI. These lesions form around a vein.
Strokes and migraines also make white spots, but they don’t have that vein in the middle. We’re hoping the MRI tool we’re building will be able to distinguish a white spot due to an MS lesion versus a white spot caused by some other condition. This would make the diagnosis process a lot more straightforward.
How will this help patients in the future?
Dr. Kaisey: The patients are the inspiration for this. In clinic, I’ve seen patients suffering side effects from the medication they were taking for a disease they didn’t have.
Meanwhile, they weren’t getting treatment for what they did have. The cost to the patient is huge—medically, psychologically, financially. I hope this study will lead to more accurate diagnosis and treatment for patients who have MS and patients who don’t.
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