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Secondary Progressive MS: Questions About the Diagnosis

Secondary Progressive MS: Questions About the Diagnosis

Answers about disease progression, diagnosis and treatment for secondary-progressive MS.

Multiple sclerosis (MS) is a progressive disease, meaning it tends to get worse over time. For many people who are initially diagnosed with relapsing-remitting multiple sclerosis (RRMS), the disease will likely progress into a second phase, called secondary-progressive multiple sclerosis (SPMS).

With relapsing-remitting MS, the symptoms will flare up at times, and then go into remission at other times. With secondary-progressive MS, relapses and recoveries may continue to occur, but a person does not completely recover between flares, and symptoms become steadily worse with each attack.

Finding out that relapsing-remitting MS has transitioned into secondary-progressive MS can be difficult to process, and can bring up many complicated feelings. Doubts about past treatment decisions. Frustration at the uncertainty that comes with the disease. Fears about neurologic symptoms getting worse and what that means for you and your family.

Why did RRMS progress to SPMS?
It is important to remember that MS is a progressive disease. While some treatments are able to slow the progression of MS for some patients, for many others the disease progresses even with treatment. Just because relapsing-remitting MS has transitioned to secondary-progressive MS, it does not mean you have done anything wrong as a patient, or as a caregiver.

When did the transition occur?
The transition from RRMS to SPMS tends to happen gradually, and it is unlikely that a healthcare provider will be able to determine exactly when the transition occurred. There is also no single test that distinguishes between RRMS and SPMS, and the two forms of the disease can be difficult to distinguish from one another (as many with any form of the disease know, MS in general can be a challenge to diagnose).

To make a diagnosis of SPMS, a healthcare provider will look at a person’s medical history and conduct a neurologic exam to see how symptoms have progressed over time. MRIs of the brain and spinal cord will be used to look for evidence of disease activity in the brain. A healthcare provider may also take a sample of a person’s spinal fluid for testing.

Though it is not common, some patients are diagnosed with SPMS as their initial diagnosis. This can happen when a person has RRMS where symptoms are very mild and are mistaken for other conditions or illnesses. RRMS will go undiagnosed, but later a person will be found to have SPMS.

How is SPMS treated?
Learning that you have SPMS can be discouraging, but it is more important than ever to work with your healthcare provider. Being diagnosed with SPMS may mean that you need to adjust your treatment plan. Treatment decisions will take into account a number of factors, including disease activity, if relapses are occurring and if neurological symptoms are getting worse or staying stable.

Treating SPMS can include a combination of disease-modifying therapies (DMTs), physical rehabilitation, occupational therapy, and treatments that address the wide range of physical and cognitive symptoms that result from MS. It is also important for patients and caregivers to address the emotional, psychological and social impact of living with the disease.

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