Notice Slow MS Worsening Earlier: What Patients Can Do

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Key Takeaway

Many people with MS notice slow worsening before doctors formally call it progressive, so asking patients directly can reveal earlier change and help guide care.

What They Found

Researchers asked 1,640 people with relapsing MS if they felt they were slowly getting worse. About one in four people labeled as relapsing said they were gradually worse, and about one in four labeled as progressive said they did not feel worse. People who said they were gradually worse reached higher disability levels faster than those who did not, even when their medical record still said relapsing. Among those later labeled progressive, patients reported worsening on average about 4 years earlier than the doctors' change in label. Older age and more disability at the start made it more likely someone with relapsing MS would report gradual worsening.

Who Should Care and Why

People with MS should care because your own notice of slow decline can be an early sign that your disease is progressing, like seeing small cracks before a wall needs repair. Caregivers can use patient-reported change to raise concerns sooner with the healthcare team, similar to tracking a family member's walking or thinking over time. Neurologists and nurses can use short, regular questions about gradual change to catch progression earlier, just as checking a car’s dashboard alerts you before a breakdown. Those with older age or higher disability at diagnosis should watch and report small worsening signs more closely, because the study found they report progression earlier. Early notice might change treatment discussions or rehabilitation plans, helping keep function and quality of life better managed.

Important Considerations

This was based on surveys and registry records from one country, so results might differ in other places or healthcare systems. Patient reports reflect how people feel, which can be influenced by mood, memory, or other health problems, so they should be one part of monitoring, not the only one. The study shows patient-reported worsening often comes before doctor labels, but it doesn’t prove changing care only on patient report is always correct — clinicians will still use tests and exams to confirm and plan treatment.

Categories:

MS Progression MS Diagnostics Early Research

Article Topics:

Multiple sclerosisPhenotypeProgressionSubtype classification

Whether you’ve recently been diagnosed with Multiple Sclerosis (MS) or are seeking to broaden your understanding of this complex, neurodegenerative disease, navigating the latest research can feel overwhelming. Studies published in respected medical journals like Journal of neurology often range from early-stage, exploratory work to advanced clinical trials. These evidence-based findings help shape new disease-modifying therapies, guide symptom management techniques, and deepen our knowledge of MS progression.

However, not all research is created equal. Some clinical research studies may have smaller sample sizes, evolving methodologies, or limitations that warrant careful interpretation. For a more comprehensive, accurate understanding, we recommend reviewing the original source material—accessible via the More Details section above—and consulting with healthcare professionals who specialize in MS care.

By presenting a wide range of MS-focused studies—spanning cutting-edge treatments, emerging therapies, and established best practices—we aim to empower patients, caregivers, and clinicians to stay informed and make well-informed decisions when managing Multiple Sclerosis.

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