What is Primary Progressive Multiple Sclerosis?

Primary progressive multiple sclerosis (PPMS) is a form of multiple sclerosis (MS), a neurological disorder characterized by damage to the myelin sheath that covers tissues in the nervous system like the spinal cord. People with MS develop neurological symptoms over time as the conductivity of nerves declines and they can experience difficulty walking, tremors, and cognitive impairments, depending on what form of the disease they have. There is no known cure for MS although a number of researchers are working on it.

Cases of primary progressive multiple sclerosis usually onset in the late 30s to 40s and the incidence of the disease is roughly equal in men and women. Patients usually notice symptoms like difficulty walking and balancing and seek medical treatment. During a neurological evaluation that includes an interview and medical imaging studies like MRI scans, a doctor can diagnose multiple sclerosis. In people with the primary progressive form, the disease progresses over time and the patient either experiences no improvement, or very small improvements. This is in contrast with other forms where patients may experience MS in varying degrees of severity over time.

This is one of four recognized forms of multiple sclerosis and it occurs in 10-15% of people diagnosed. The rate of progression varies. Some people with primary progressive multiple sclerosis are able to remain active for decades after treatment, while others may need to use mobility aids within the same time period. Some people experience cognitive symptoms while others do not, since primary progressive multiple sclerosis usually attacks the spinal cord before penetrating to the brain.

Treatments can include courses of steroids and physical therapy, along with treatments to address individual symptoms like pain and incontinence. A neurologist can monitor the patient over time for signs of changes and help a patient develop a long term plan for treatment and care that includes plans for caregivers. People with primary progressive multiple sclerosis will eventually need increasing help and support. Planning ahead for this event can make the transition less traumatic and also increase independence for the patient.

Clinical trials for medications and treatment protocols are constantly ongoing. People who have been diagnosed with primary progressive multiple sclerosis may want to ask their doctors about clinical trial eligibility or search a clinical trial database to find trials to enroll in. Trials offer access to medications and treatments that are not generally available and participation in clinical trials provides valuable material that can be used to help other MS patients.