Multiple Sclerosis (MS) is characterized by repeated “insults”or attacks on the brain in which the coating of the nerve cells (myelin) is stripped off during an immune system attack on the brain. In the most common form, Relapsing Remitting MS (RRMS), the lesions partly or completely heal after each relapse. Clinical symptoms improve or disappear between attacks which can vary in frequency. The larger the number of relapses, the less complete healing in successive relapses and the greater the disability.
The types of MS are RRMS, Primary Progressive MS (PPMS). Secondary Progressive MS (SPMS), Clinically Isolated syndrome (CIS-only one known flare) and Radiologically Isolated Syndrome (RIS-changes on MRI without clinical symptoms). Many think that the two types of progressive MS are actually distinct disorders rather than different forms of MS.
PPMS is a diagnosis given to 10-15% of patients at initial diagnosis. In this type of MS there is a gradual worsening of symptoms, especially involving walking, without improvement or remissions in between onset of new symptoms. Symptoms are slower to develop but have ongoing progression with few or no relapses, meaning no sudden worsening of symptoms. MS patients with PPMS tend to be diagnosed at an older age than patients with other forms of MS (age >40). As in all types of MS, brain lesions are often seen on MRI. However, in PPMS, spinal cord lesions are often more prominent. Patients with PPMS suffer most from difficulty walking, balance issues, muscle weakness/stiffness/spasms, cognitive changes, extreme fatigue, bowel and bladder issues and cognitive decline. The clinical criteria for PPMS is one year of gradual decline without attacks. The only FDA-approved medication specifically for PPMS is Ocrevus (ocrelizumab).
Secondary Progressive MS (SPMS) starts as RRMS but often progresses to SPMS over time as there are fewer remissions and greater disease progression. The symptoms are similar to those of PPMS and the diagnosis is a historical one. Especially with the effective medications available, not everyone with RRMS will develop SPMS. Risk factors for progressing to SPMS are female gender (women are twice as likely to develop SPMS as men) and being white. While there are no ways to determine who will make this transition, those who have more frequent and more severe attacks are more susceptible. About half of patients with RRMS progress to SPMS in 10 years and 90 percent in 25 years.This underscores the need to pursue the most effective medications in designing your treatment. The basis for fewer relapses is due to an overall reduced amount of inflammation. As the disease progresses, the nerve cells under the myelin become damaged and this damage is not reversible. SPMS is treated with disease-modifying therapies (DMTs) which have been show to slow progression. The most common therapies used in treated SPMS are Rebif, Copaxone, Novantrone, Zeposia, Mayzent and Mavenclad.
BeCare MS can help you to track your symptoms, your disability scores and your neurologic function with quantified assessments on a phone app. It is essential that you can share your disease course with your treating clinician to be on the correct medication. Become empowered; be a driver in your own MS journey.