What Is Primary Progressive MS?

Written by Ann Pietrangelo | Published on January 21, 2014
Medically Reviewed by George Krucik, MD, MBA on January 21, 2014

The 4 Basic Forms of MS

Multiple sclerosis is a condition in which inflammation damages nerve cell insulation (myelin) throughout the central nervous system. Relapsing-remitting MS (RRMS) is the most common form of the disease. Acute attacks are followed by remissions in which the disease doesn’t progress. When this form becomes progressive, it’s called secondary-progressive MS (SPMS).

The rarest form, primary-relapsing MS (PRMS), is progressive from the start, but also involves clear relapses. Primary-progressive MS (PPMS) is progressive from the start. There are no acute relapses or remissions. According to the National MS Society, about 10 percent of people with MS are diagnosed with PPMS.

Symptoms

People with PPMS experience a steady deterioration of neurologic function. It becomes increasingly difficult for signals from the brain to get through to the rest of the body. Although there are no clear relapses and remissions like that of RRMS, the rate of progression can vary over time.

Symptoms include numbness, weakness, and dizziness. People with PPMS may have trouble with balance and coordination, or difficulty walking. Other symptoms include:

Diagnosis

Diagnosing any form of MS can take a long time. That’s because no single test can confirm MS. The process begins with a detailed patient history and a complete neurological examination. Diagnostic testing may include spinal tap, visual tests, and evoked potentials, a test that measures the brain’s response to electrical stimulation.

MRI of the brain and spinal cord can help doctors identify lesions, a telltale sign of MS. Before making the diagnosis, other conditions with similar symptoms must be ruled out. Once the diagnosis is made, progression from the start and lack of clear relapses indicate a progressive course.

Causes

The precise cause of MS is unknown. According to researchers at Duke Center for Human Genetics, MS is not a classic inherited disorder. However, evidence suggests there is a genetic predisposition. You have a slightly increased risk of MS if you have a first, second, or third degree relative with the disease.

There are many avenues of research into what may trigger the immune system response responsible for MS. Possibilities include viruses or environmental toxins. Why some people develop PPMS is also unknown. MS, in any form, is not contagious.

Who Gets Primary Progressive MS?

MS is more common in Caucasians than in other ethnic groups. Although MS is more common in women than in men, both sexes get PPMS at about the same rate. Most people with PPMS begin to notice symptoms while in their 30s.

According to Johns Hopkins Medicine, about 10 percent of people with MS have PPMS. Worldwide, an estimated more than 2.5 million people have MS. That includes 350,000 to 500,000 in the United States, according to the Multiple Sclerosis Foundation. Because doctors aren’t required to report or track MS, these figures are only estimates.

Treatment

While there are many long-term therapies approved for use in RRMS, they’re not effective in slowing progression in patients with PPMS. Currently, there are no disease-modifying medications to treat PPMS. Treatment is focused on relieving individual symptoms.

Targeted therapies for symptoms like bladder and bowel dysfunction, erectile dysfunction, and spasticity may be helpful. Over-the-counter and prescription medications can help relieve aches and pains. Your treatment depends entirely upon your symptoms and your overall health. Currently, there is no cure for MS.

Maintaining Your Quality of Life

Taking care of your overall health can improve your quality of life. Choose a diet rich in nutrients and low in empty calories. Get regular exercise to help strengthen muscles and boost energy. Gentle exercise practices like tai chi and yoga can help with balance, flexibility, and coordination.

Some people find that massage, mediation, or acupuncture help to alleviate stress and ease pain. Some people with PPMS may benefit from occupational therapy. Take advantage of assistive devices that can help you function and maintain your independence. Don’t hesitate to apply for a special parking permit.

Prognosis

As with other forms of MS, symptoms vary tremendously from person to person, and so does the rate of progression. Over time, people with PPMS may develop problems walking and moving around independently.

Fatigue and other symptoms may make it difficult to perform everyday activities, but most people with MS have a normal or near-normal lifespan. If you have PPMS, be sure to see your doctor on a regular basis.

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