Diagnosing secondary progressive multiple sclerosis requires careful observation of symptom patterns over time, detailed medical history review, and specialized testing to track nerve damage and disease progression. Unlike other forms of MS, SPMS can be challenging to identify because the transition from relapsing-remitting MS happens gradually, often without clear boundaries.
Introduction: Who Should Undergo Diagnostics
If you have been living with relapsing-remitting multiple sclerosis (RRMS) for several years, you should discuss diagnostic testing with your healthcare provider if you notice your symptoms gradually worsening over time. This is especially important if you find that your symptoms no longer seem to come and go in distinct episodes but instead are slowly becoming more persistent and severe.[1]
You should seek diagnostic evaluation when you observe changes that affect your daily life for at least six months without experiencing a typical relapse. For example, if walking becomes progressively more difficult, if you notice your balance deteriorating steadily, or if fatigue intensifies without periods of improvement, these could be signs that your MS is transitioning to a progressive stage.[3][15]
People who have had RRMS and notice that relapses are becoming less frequent but disability is increasing should also consider diagnostic testing. The transition from RRMS to SPMS typically occurs between 10 to 25 years after the initial MS diagnosis, usually when someone is in their 40s or 50s. However, the timeline varies significantly from person to person, and some people may experience this transition earlier or later.[3][12]
Certain factors may place you at higher risk for developing SPMS. If you are male, if you had frequent and severe relapses early in your MS course, or if you had symptoms that started later in life, you may benefit from closer monitoring and more frequent diagnostic assessments.[1]
Diagnostic Methods for Identifying Secondary Progressive MS
Diagnosing secondary progressive multiple sclerosis is primarily a clinical diagnosis, meaning it relies heavily on your medical history and the pattern of symptoms you experience over time rather than on a single definitive test. Your healthcare provider will need to observe that your symptoms have been gradually worsening for at least six months in the absence of a relapse before considering a diagnosis of SPMS.[3][12][15]
Medical History and Symptom Review
The diagnostic process begins with a thorough discussion of your medical history. Your healthcare provider will ask detailed questions about when your symptoms started, how they have changed over time, and how they affect your daily activities. They will want to understand whether your symptoms come and go with clear periods of recovery, or if they have been steadily worsening without breaks. This information is crucial because the key feature that distinguishes SPMS from RRMS is the pattern of continuous progression rather than distinct relapses followed by remissions.[1][2]
It’s helpful to explain to your doctor whether you still experience occasional flare-ups of symptoms. Some people with SPMS do continue to have relapses, though these become less frequent over time. Your provider needs to know if you recover fully from these episodes or if some symptoms persist and gradually worsen even between relapses.[4]
Physical and Neurological Examination
After reviewing your history, your healthcare provider will perform a physical and neurological examination. This exam checks various aspects of your nervous system function. The doctor might assess how you walk and test your balance, coordination, muscle strength, and reflexes. They may also evaluate sensations in different parts of your body, check your vision, and test cognitive functions such as memory and concentration.[1][2]
These examinations help the provider understand the current level of disability you’re experiencing and compare it to previous assessments to track progression. The neurological exam provides objective measurements that complement your description of symptoms and help paint a complete picture of how your condition is evolving.[1]
Magnetic Resonance Imaging (MRI)
MRI scans are among the most important diagnostic tools for evaluating MS and tracking its progression. An MRI uses powerful magnets and radio waves to create detailed images of your brain and spinal cord. In MS, the test can reveal areas of damage called lesions where the protective covering around nerve fibers has been destroyed.[1][4][6]
When diagnosing SPMS, doctors look for several things on MRI scans. They check for new lesions, which indicate ongoing disease activity. They also look at existing lesions to see if they are enlarging or changing. Additionally, MRI can show shrinkage of brain tissue, called atrophy, which often occurs as MS progresses and nerve cells are damaged or lost.[1][4]
The pattern of lesions and the extent of brain and spinal cord damage visible on MRI help distinguish SPMS from other forms of MS. However, it’s important to understand that MRI findings alone cannot definitively diagnose SPMS. The scan results must be interpreted together with your clinical symptoms and medical history.[4]
Spinal Tap (Lumbar Puncture)
In some cases, your doctor may recommend a spinal tap, also called a lumbar puncture. During this procedure, a small amount of cerebrospinal fluid (CSF) is collected from the space around your spinal cord using a thin needle. The fluid is then analyzed in a laboratory to look for specific substances that indicate inflammation or immune system activity in the central nervous system.[4]
A spinal tap can help evaluate the extent of nerve damage and distinguish SPMS from other neurological conditions that might cause similar symptoms. While not always necessary if you already have an established MS diagnosis, it can provide additional information about disease activity and progression.[4]
Classification of SPMS Subtypes
When diagnosing SPMS, doctors now use specific terms to describe the current state of your disease. These classifications help guide treatment decisions. Your condition may be described as “active” or “non-active” based on whether you’re still experiencing relapses or showing new activity on MRI scans. It may also be described as “with progression” or “without progression” depending on whether your disability level is increasing over time.[4][16]
These descriptors are independent of each other, meaning you could have active SPMS with progression, non-active SPMS with progression, active SPMS without progression, or non-active SPMS without progression. Understanding which category applies to you helps your healthcare team determine the most appropriate treatment approach.[4][16]
Diagnostics for Clinical Trial Qualification
If you’re considering participating in a clinical trial for SPMS, you will need to undergo specific diagnostic tests and meet certain criteria to qualify for enrollment. Clinical trials have standardized requirements to ensure that participants have confirmed SPMS and to establish a baseline for measuring how well experimental treatments work.[5][11]
EDSS Assessment
One of the most commonly used tools in clinical trials is the Expanded Disability Status Scale (EDSS). This scoring system rates your level of disability on a scale from 0 to 10, with higher numbers indicating greater disability. For a clinical trial diagnosis of SPMS, researchers typically look for documented worsening on the EDSS score over a specific time period, usually measured over at least six months to a year.[5][11]
A common definition used in research studies requires a 1-point increase in EDSS score if your baseline score is 5.5 or below, or a 0.5-point increase if your baseline score is 6.0 or above. This progression must occur in the absence of a relapse to be considered true progression rather than temporary worsening from an acute attack.[5]
Confirmation of Progressive Disease Course
Clinical trials typically require that you have experienced observed progression of neurologic symptoms for at least six months without recovering, and that this progression is not related to relapses. Researchers need to confirm that symptoms are steadily worsening rather than fluctuating with the typical relapse-remission pattern of RRMS.[5][15]
To meet this criterion, your healthcare provider will review your medical records to document how your symptoms have changed over time. They will look at previous EDSS scores, neurological examination findings, and your reported experiences to establish a clear pattern of progression.[5]
MRI Requirements for Trial Entry
Most clinical trials require recent MRI scans of your brain and spinal cord as part of the screening process. These scans help researchers confirm your diagnosis, assess the extent of disease activity, and establish a baseline for comparison during the study. Trial protocols may specify requirements about the timing of these scans, often requiring MRI images taken within a certain number of months before enrollment.[4][16]
Researchers use these baseline MRI scans to monitor changes during the trial. They look for new or enlarging lesions, changes in brain volume, and other markers of disease progression. This imaging data helps determine whether an experimental treatment is slowing disease activity or preventing further damage.[4][16]
Additional Trial Screening Tests
Clinical trials may also require additional blood tests, cognitive assessments, and other evaluations to ensure you meet all eligibility criteria and to screen for any conditions that might interfere with the study or pose safety risks. These comprehensive assessments help researchers select appropriate participants and gather complete baseline information for comparison throughout the trial period.[11]
Some trials may include tests of walking speed, hand function, cognitive processing speed, or quality of life measures. These assessments provide objective data about how SPMS affects various aspects of daily functioning and help researchers evaluate whether an experimental treatment provides meaningful benefits beyond what appears on imaging studies.[5][11]
