RealTalk MS Episode 412: Understanding Late-Onset MS with Dr. Jacqueline Nicholas

Date: July 21, 2025
Host: Jon Strum
Guest: Dr. Jacqueline Nicholas, System Chief of Neuroimmunology and Multiple Sclerosis at the Ohio Health MS Center

Episode Overview

This episode focuses on a growing clinical concern in the MS community: late-onset multiple sclerosis (MS), defined as diagnosis of MS at age 50 or older. Host Jon Strum is joined by Dr. Jacqueline Nicholas to discuss the unique presentation, challenges, and management strategies for older adults facing an MS diagnosis. The episode also covers recent MS research breakthroughs, new neuroimaging technology, the role of patient voices in drug development, and practical support for MS patients as they age.

Key Discussion Points and Insights

1. Research Updates in MS Prevention and Detection

EBV Antibody Study as Potential MS Predictor

• Jon Strum explains a recent study showing high levels of EBNA1 antibodies after Epstein Barr Virus (EBV) infection can predict MS development up to five years in advance.
• Insights:
  • 98% of MS patients vs. 78% without MS had detectable EBNA1 antibodies.
  • High antibody levels in two or more samples post-EBV infection increased MS risk 400-fold.
  • Raises the possibility of screening at-risk individuals for preventative intervention.

Notable Quote:

“Put plainly, someone for whom high levels of the EBNA1 antibodies are detected at least twice after being infected with the Epstein Barr virus will likely develop MS in the following years.” (05:41, Jon Strum)

2. Late-Onset MS: Definition and Distinctions

[12:59–14:31]

What is Late-Onset MS?

• Diagnosis or MS symptom onset at age 50 or older (usual onset: 20s–40s).
• Makes up ~5% of MS cases; trend increasing with better diagnostics and increased longevity.
• Typically presents with:
  • Progressive disease course (not relapsing/remitting).
  • More motor disability (e.g., weakness, walking/balance problems).
  • Often more advanced disability at diagnosis.

Notable Quote:

“...these individuals often tend to present with more of a progressive phenotype type with a gradual worsening of neurologic function over time... more disability at the time of diagnosis.” (13:36, Dr. Nicholas)

3. Delayed Diagnosis and Overlooked Symptoms

[14:31–15:45]

• Mild, non-specific MS symptoms (fatigue, numbness, brief episodes) often attributed to aging or other causes.
• Possible for significant time to elapse between first subtle symptoms and diagnosis in older adults.

Notable Quote:

“Many of these individuals may ultimately be presenting when these problems have become more significant in older age.” (15:34, Dr. Nicholas)

4. Distinguishing MS Progression from Normal Aging

[15:45–17:57]

• Clinicians must differentiate new/worsening symptoms due to MS from those caused by aging or comorbidities.
• Requires contextualizing functional changes (e.g., slowed walking, balance issues) within clinical history, timing, and exam findings.
• Environmental factors (heat, time of day) can temporarily exaggerate MS symptoms.

Notable Quote:

“If I’m seeing...weakness or significant balance or walking problems in somebody with MS, I would be much more concerned that this is progression from MS than normal aging.” (17:30, Dr. Nicholas)

5. Efficacy and Considerations of Disease-Modifying Therapies for Older Adults

[17:57–21:00]

• Only two FDA-approved therapies for progressive MS:
  • Ocrelizumab (primary progressive MS)
  • Siponimod (secondary progressive MS)
• Clinical trials typically enroll younger patients (<55), making data for older adults limited.
• Many older patients still offered DMTs, but therapy choice is individualized due to:
  • Comorbidities (e.g., infection risk increases with age)
  • Type/extent of progression
• Therapies can slow progression but don’t stop it completely.

Notable Quote:

“In general, individuals coming in with late-onset MS would still likely be offered a disease modifying therapy. But...some of our therapies do have more risks in individuals who are older, particularly—we get concerned about infection...” (19:55, Dr. Nicholas)

6. Impact of Comorbidities on Diagnosis and Treatment

[21:00–23:21]

• Older adults are more likely to have high blood pressure, diabetes, high cholesterol—conditions that can cause brain changes and complicate MS diagnosis.
• MRI findings (white spots) may be mistaken for MS, making detailed history and evaluation essential.
• Optimal management of comorbid conditions enhances brain health and may slow MS progression.

Notable Quote:

“If we get better control of that blood pressure and make sure that the cholesterol is being managed and the blood sugars...that person is going to have better brain health.” (22:41, Dr. Nicholas)

7. Supporting Well-Being and Engagement for Older MS Patients

[23:21–26:56]

• Social and community connections are key for emotional and physical well-being.
• Addressing depression and anxiety is critical (rates higher in MS population).
• Physical activity is “as important as disease-modifying therapy”; tailored exercise programs can be adapted for all abilities.
• Access to resources like neurorehab, online exercise platforms, community groups (Silver Sneakers, YMCA) is recommended.

Notable Quote:

“Exercise is as important as disease modifying therapy. We know that people who exercise with MS tend to maintain their level of function much better.” (25:03, Dr. Nicholas)

“You can exercise sitting in your chair. You can exercise if you only have movement of one arm. So there are a lot of things that can be done.” (26:46, Dr. Nicholas)

8. Emotional Impact of Late-Onset MS Diagnosis

[26:56–29:08]

• Older adults may question the diagnosis, having believed MS “happens to younger people.”
• Diagnosis may affect personal identity, retirement plans, sense of future.
• Connecting with others who have late-onset MS can be empowering and provide support.
• While a diagnosis at any age is challenging, younger people may have more treatment options and resources; nonetheless, support is available for all.

Notable Quote:

“Many people who are diagnosed with MS later in life really question that diagnosis...they may have read online that these are spring chickens that come in with MS in their 20s to 40s. And why am I now at the age of 60 having this problem?” (27:14, Dr. Nicholas)

Notable Quotes and Memorable Moments

• “If I’m seeing...weakness or significant balance or walking problems in somebody with MS, I would be much more concerned that this is progression from MS than normal aging.” (17:30, Dr. Nicholas)

• “Exercise is as important as disease-modifying therapy.” (25:03, Dr. Nicholas)

Timestamps for Key Segments

• [01:34] – New research on EBV and predictive blood tests for MS
• [06:40] – Ultra high-resolution brain imaging and the BRAIN Initiative
• [08:53] – Patient voices in FDA drug review and "Shaping Tomorrow Together"
• [12:09] – Introduction to late-onset MS, guest intro
• [12:59] – Dr. Nicholas defines late-onset MS and its clinical differences
• [14:31] – Missed or mild symptoms and late diagnosis
• [15:45] – Differentiating MS progression from aging
• [17:57] – Are DMTs effective for late-onset MS?
• [21:00] – Managing comorbidities in older MS patients
• [23:21] – Staying active and socially connected with MS in older age
• [26:56] – Emotional impact and psychological adjustment following diagnosis

Additional Resource Mentions

• "Shaping Tomorrow Together" patient-focused drug development meeting (October 29)
• CRUSH MS Napa Valley fundraiser (July 26)
• Importance of social engagement, mental health resources, adaptive physical activity platforms

Episode Tone

The episode maintains a compassionate, practical, and hopeful tone, encouraging informed self-advocacy, engagement with specialists, and community connection for those navigating late-onset MS.