When it comes to diagnosing the chronic autoimmune disease multiple sclerosis (MS), doctors have been trained to traditionally suspect MS in younger women of northern European descent. The only problem: MS, which affects the central nervous system, can and does occur in people of all races and ethnicities.
"Contrary to what we may have learned in medical school, MS does not spare any specific demographic groups," Tirisham Gyang, MD, of Ohio State University Wexner Medical Center in Columbus, told 鶹ý.
A 2022 study looked at 2.6 million adult members of the Kaiser Permanente Southern California health plan and found that similar numbers of white people and Black people received an MS diagnosis. (There were slightly more cases of MS in white people, but the difference was not statistically significant.)
More Aggressive Disease
An increasing body of research shows that Black people often experience MS differently than others. For example, the reported that Black people with MS often have more aggressive disease.
A 2022 review catalogued a wide array of worse outcomes that Black people with MS may experience, including:
- More severe disease at baseline
- Diagnosis at a later stage of disease
- More damage to the retina (visual impairment)
- Worse scores on the Expanded Disability Status Scale (EDSS), a measure of MS-related disability
- Disability that is worse and/or faster-progressing
- Possible reduced effectiveness of disease-modifying therapy (DMT)
- Death up to a decade earlier than white people with MS
"Multiple studies have clearly shown specific markers that indicate more accelerated disability or a more aggressive phenotype of the disease in African Americans specifically compared with white individuals," Gyang said. "We don't know exactly why these differences occur, but this is a very active area of research."
Social Determinants of Health
Although scientists don't yet know the reasons for these differences, it is likely that the social determinants of health -- i.e., the nonmedical factors that influence a person's health, well-being, and quality of life -- play a role.
MS patients of color and/or lower socioeconomic status may also have issues with access, including access to:
- Neurologists who can provide specialized MS care
- Multidisciplinary care
- Physical or occupational therapy
- Mental health services
- Effective DMTs
"All these factors are going to affect that individual and have an effect on how disabled the patient becomes over time," Gyang said. "In MS 'time is brain,' so the earlier and more aggressively we intervene, the better the outcomes over that patient's lifetime."
Advocating for Your Own Care
The symptoms of MS affect several major body functions and systems, including:
- Vision
- Movement/balance and walking/memory/mental health
- Sensation
- Urinary and bowel function
The initial symptoms of MS often onset over hours to days and are localized in specific body parts, Gyang explained. "If you can say that you developed blurry vision in your right eye on such and such a date or left-side weakness in a specific timeframe, it could be MS. If you generally feel under the weather and can't identify when it started, however, it's much less likely to be MS."
If you think you might have MS, see a doctor as soon as possible, and be prepared to advocate for yourself. "Unfortunately, providers don't always suspect MS when they should, so you want to ask questions and make sure the appropriate workup is done," Gyang said. "If you have symptoms that suggest a neurologic problem, your best bet is to see a neurologist."
Your doctor will need to see a magnetic resonance imaging (MRI) scan of your brain to make a definitive diagnosis of MS. "The MRI is the most important tool in helping us diagnose MS," Gyang said. "We typically cannot diagnose MS without it. Depending on a patient's symptoms, we may also include the spinal cord and optic nerves in the MRI."
Blood tests and a lumbar puncture (i.e., spinal tap) may also be needed to make the diagnosis, she added.
More Diversity in Clinical Trials
With so many DMTs for MS on the market or in development, there is a huge need for people with MS to participate in clinical research. That's even more true for Black people with MS, Gyang said. "If we have a drug that is only tested in men, how do we know it will be safe and effective in women? The same is true of racial makeup. If your research sample is not diverse it's difficult to generalize the study result to everyone affected by the disease outside of that clinical study."
A U.S. Census Bureau report in 2022 found that although non-Hispanic Blacks made up 13.6% of the population, only one of seven major MS studies included a representative sample of Black patients, at 16.1% of the study population. Among the other six trials, the highest percentage of Black participants was only 5.5%, and the lowest had only 1.1% (10 of 942 patients).
To counteract this lack of representation, a study using the hopes to enroll at least 20,000 Black Americans with MS living in urban, suburban, and rural communities throughout the U.S.
To join the registry, participants complete an extensive initial questionnaire, followed by additional annual follow-up questionnaires. Topics include the following:
- Demographics
- Socioeconomic status
- Initial symptoms
- How long it took to receive a diagnosis
- Type of MS
- Use of DMTs
- Quality of life
- Access to care
- Disability status
The registry's organizers say participation is easy and secure, and requires no changes in care.
Read previous installments in this series:
For Your Patients: What to Expect After a Multiple Sclerosis Diagnosis
For Your Patients: What Are the Different Types of MS?
For Your Patients: Coping With the Mental Health Challenges of Multiple Sclerosis
For Your Patients: The Benefits of Early Aggressive Treatment for MS
For Your Patients: Understanding Progressive MS and Relapsing MS
For Your Patients: Understanding Cognitive Changes in Multiple Sclerosis
"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.