Long-Term Tracking: MRI and Clinical Monitoring

Monitoring Secondary Progressive Multiple Sclerosis (SPMS) is a marathon, not a sprint. Because the disease moves slowly, “surveillance” isn’t just about looking for new spots on an MRI; it’s about carefully tracking small changes in how your body functions over years ^[1]. This requires a consistent, individualized schedule of both clinical exams and imaging to distinguish true disease progression from normal daily fluctuations ^[2][3].

Clinical Surveillance Schedule

Your neurologist will typically recommend a formal assessment every 6 to 12 months, tailored to your specific needs, age, and treatments ^[4][3]. During these visits, the focus is on three key “performance” measures. To get the most accurate data, these tests should be performed the same way every time to account for “practice effects”.

• EDSS (Expanded Disability Status Scale): This is the standard “ruler” for MS disability. In SPMS, a change is usually only considered “confirmed” if it is still present on a repeat test 6 months later ^[2][5].
• T25FW (Timed 25-Foot Walk): This tracks your walking speed. A 20% increase in the time it takes you to walk 25 feet is a hallmark of meaningful progression in research ^[2][6].
• 9HPT (9-Hole Peg Test): This measures your hand and arm coordination. Like the walking test, a 20% change in your time suggests that the disease is affecting your upper-body function ^[2][6].

Modern MRI Protocols for SPMS

Imaging in SPMS has changed. While MRI was used in earlier stages to find “active” inflammation, it is now used to monitor the slow loss of brain tissue (atrophy) and the development of “slowly expanding lesions” ^[7][8].

• 3D FLAIR: This is a highly useful sequence for MS brain MRIs when available ^[7][9]. It provides a high-resolution view that makes it easier for radiologists to compare this year’s scan to last year’s. (Slowly expanding lesions, or SELs, are primarily an emerging research concept and may not be routinely measured on standard clinical reports).
• Judicious Gadolinium Use: In the RRMS phase, gadolinium (contrast dye) was used to find “enhancing” lesions. In SPMS, however, progression often happens without these active, enhancing spots ^[10]. Current guidelines suggest using gadolinium “judiciously”—only when it is needed to make a specific treatment decision or if there is a sudden, unexplained change in your symptoms ^[10].
• Spinal Cord MRI: Unlike brain MRIs, spinal cord scans are not usually required every year ^[11]. They are typically reserved for when you have new “spinal” symptoms (like new bladder changes or leg numbness) or if your brain MRI looks stable but your physical walking ability is clearly worsening ^[12][13].

Looking Beyond the MS Diagnosis

As SPMS progresses, it can impact other parts of your health that aren’t strictly “neurological.” Long-term surveillance must include a focus on your overall well-being ^[14].

• Bone Health: Reduced mobility and prior steroid use can lead to thinning bones (osteoporosis). Discuss with your doctor if a DEXA scan is appropriate to monitor your bone density and ensure you aren’t at high risk for fractures ^[15].
• Cardiovascular Health: People with SPMS often have a higher risk of vascular issues like high blood pressure or high cholesterol ^[14]. Managing these is critical because “vascular comorbidities” (other health problems) are associated with worse MS outcomes ^[14].
• Skin and Pressure Integrity: If your mobility is limited, your care team should help you monitor for pressure injuries (sores). Early detection of skin redness in areas where you sit or lie down can prevent serious infections ^[16].
• Vaccination Status: Because some SPMS treatments can affect your immune system, staying up-to-date on vaccinations (like the flu, pneumonia, and shingles vaccines) is a vital part of your long-term safety plan ^[17]. Live vaccines may be unsafe during certain immune therapies and may need to be administered before you start a new DMT.

When to Seek Urgent Care

While SPMS changes are usually slow, you should contact your care team urgently if you experience:

• An inability to pass urine, severe flank pain, or a high fever (signs of a potentially severe infection).
• Sudden, severe weakness, vision loss, or trouble speaking.
• Repeated, unexplained falls.
• A new or clearly worsening neurologic symptom lasting more than 24 hours that is not explained by heat, fever, or an obvious infection.