MS Diagnostic Delays Persist, Especially in Under-Resourced Areas

Patients with multiple sclerosis (MS) continue to face significant delays in diagnosis and access to neurological care, which this year’s World Brain Day, observed July 22 under the theme "Brain Health: Access for All," is drawing attention to.

MS is a neurological condition that affects the central nervous system and disrupts communication between the brain and the rest of the body. More than 3.4 billion people globally, over 40% of the population, live with a neurological condition, making brain disorders the leading cause of disability globally, according to the World Federation of Neurology.¹

The MS International Federation reports that roughly 2.8 million people are living with MS.² Delayed access to a neurologist is a widespread issue with many areas having fewer than one neurologist per million people.¹ Under-resourced communities are disproportionately affected by this lack of access.

MS is a condition that varies in symptoms from patient to patient, and diagnostic error leads to delayed diagnosis and treatment, which impacts clinical outcomes.

Symptoms Worsening Due to Delayed Access

Early diagnosis and treatment are crucial to supporting MS patients with disease and symptom management, but there is no single diagnostic test for MS. Patients and clinicians must go through a rigorous process of assessing symptoms, as diagnosis relies on clinical judgment, MRI findings, and ruling out conditions that mimic MS.

While prior research attributed diagnostic delays (DD) to many factors such as healthcare system barriers, comorbidities, primary progressive MS, and educational level as potential contributors to delay, a 2023 study in Multiple Sclerosis Journal suggested that these attributes have no significant impact on delay length. However, researchers found that DD in MS is common and often associated with early misdiagnoses and greater disease burden at the time of diagnosis.³

Additionally, a survey study published in Multiple Sclerosis Journal – Experimental, Translational and Clinical, assessing 428 patients with MS, found a median DD of 2 months (mean of 22.8 months). Roughly 40% of participants reported initial misdiagnosis of symptoms later attributed to MS, which was linked to longer diagnostic delay. Also, 50.7% of participants reported earlier MS-related symptoms that were never initially clinically evaluated, resulting in a median diagnostic delay of 5.4 years. However, the study also found diagnostic delay has been decreasing over time, with revisions to the MS diagnostic criteria.⁴

The Heavy Economic Burden of MS

Delays in diagnosis come at a high clinical and financial cost for patients and providers. Direct costs ranged from $16,614 (2006) to $72,744 (2017) per patient per year, according to a systematic literature review examining the economic burdens of MS in the US and published in the Journal of Managed Care & Specialty Pharmacy. Disease-modifying therapies (DMTs) were the biggest contributors, accounting for 43% to 78%, while pharmacy costs were another major cost driver across patients with mild, moderate, and severe disability. Patients who experience relapses incurred significantly higher costs, resource use, and work impairment compared with those without relapses, with hospitalization charges serving as the major driver of those higher costs.⁵

Teleneurology and McDonald Criteria Aiding MS Care

The McDonald Criteria are a set of clinical, radiographic, and laboratory criteria used in diagnosing MS and have significantly evolved over the years. Earlier symptoms can be confusing as they can be attributed to other ongoing health issues; however, symptoms can worsen over time if not treated properly. With no single test to confirm an MS diagnosis, the McDonald Criteria were updated in 2017 with a set diagnostic criterion to differentiate MS from other conditions. However, because the criteria are only a set of guidelines, improper application can potentially lead to misdiagnosis.⁶

Teleneurology is another tool that has helped reduce access and travel barriers for MS patients in rural areas. In an interview with The American Journal of Managed Care®, Marisa McGinley, DO, highlighted how technology has helped expand the quality and reach of MS care. McGinley explains, “…in addition to geographic barriers, it's also just the fact that a lot of our MS patients are working…and taking time to get to a health care professional, in general, can be quite difficult….” She added that “it helps integrate [technology] into a health care model to decrease a lot of those barriers of getting to a physical office location.”⁷

In addition to improving geographic issues, teleneurology technology is evolving to provide a clearer picture of patient symptoms and outcomes without accessibility barriers tied to in-office visits. McGinley highlighted how office visits limit the information clinicians receive.

“There are other technologies…that are going to be coming that help us monitor neurologic function outside of the office environment, too, because another frustrating thing for clinicians and also patients is an office visit is very much a snapshot,” she said.⁷ However, new technologies can provide more patient-reported outcomes and data on their daily lives.

World Brain Day: Awareness for Expensive and Unstable MS Treatments

World Brain Day highlights the many barriers patients with MS face in receiving treatment. Misdiagnosis, DDs, inaccessibility to care, and evolving understanding of the disease all contribute to patients struggling to manage MS and high costs. Delays in access leave patients undertreated and often struggling for years attempting to manage their symptoms. However, updates to the McDonald’s Criteria reflect developments to help reduce the burden of misdiagnosis and DDs to better support patients. Additionally, access to teleneurology and new technologies has been valuable in helping patients and providers navigate treatment and care delivery.

“I think technology has a great opportunity to decrease barriers and help us really understand how the disease is impacting our patients' daily life experience,” McGinley said.⁷

References

1. World Federation of Neurology. 2026 World Brain Day dedicated to brain health: access for all. World Federation of Neurology. Published June 23, 2026. Accessed July 20, 2026. https://wfneurology.org/activities/news-events/wfn-news/world-brain-day-2026-brain-health-access-for-all
2. Multiple Sclerosis International Federation. Atlas of MS: Mapping Multiple Sclerosis Around the World – Key Epidemiology Findings. 3rd ed. Multiple Sclerosis International Federation; 2020. Accessed July 20, 2026. https://www.msif.org/wp-content/uploads/2020/10/Atlas-3rd-Edition-Epidemiology-report-EN-updated-30-9-20.pdf
3. Uher T, Adzima A, Srpova B, et al. Diagnostic delay of multiple sclerosis: prevalence, determinants and consequences. Mult Scler. 2023;29(11-12):1437-1451. doi:10.1177/13524585231197076
4. Solomon AJ, Weinstein SM, Shinohara RT, Aoun SM, Schmidt H, Solari A. Diagnostic delay and misdiagnosis of symptoms reported by patients with multiple sclerosis participating in a research registry. Mult Scler J Exp Transl Clin. 2025;11(2). doi:10.1177/20552173251333390
5. Schauf M, Chinthapatla H, Dimri S, Li E, Hartung DM. Economic burden of multiple sclerosis in the United States: a systematic literature review. J Manag Care Spec Pharm. 2023;29(12):1354-1368. doi:10.18553/jmcp.2023.23039
6. Solomon AJ, Naismith RT, Cross AH. Misdiagnosis of multiple sclerosis: impact of the 2017 McDonald criteria on clinical practice. Neurology. 2019;92(1):26-33. doi:10.1212/WNL.0000000000006583
7. McCormick B. Dr Marisa McGinley explains how technology can expand MS care access. AJMC. Published March 1, 2024. Accessed July 20, 2026. https://www.ajmc.com/view/dr-marisa-mcginley-explains-how-technology-can-expand-ms-care-access