Progressive Multiple Sclerosis

Progressive multiple sclerosis is a form of MS where symptoms gradually worsen over time, affecting about 10-15% of people diagnosed with multiple sclerosis. Understanding this condition and available treatments can help patients maintain quality of life.

Table of contents

• What Is Progressive Multiple Sclerosis?
• Types of Progressive Multiple Sclerosis
• Symptoms of Progressive MS
• Causes and Risk Factors
• Diagnosis
• Possible Complications
• Treatment Approaches
• Living With Progressive MS

What Is Progressive Multiple Sclerosis?

Progressive multiple sclerosis is a condition where the nervous system gradually loses function over time. Multiple sclerosis (MS) is a disease that affects your central nervous system, which includes your brain, spinal cord, and the nerves in your eyes^[1]. In MS, your immune system mistakenly attacks myelin, the protective covering that surrounds nerve fibers. This damage disrupts the normal flow of messages that your nerves send throughout your body to control functions like vision, sensation, and movement^[2].

The term “progressive” means that symptoms get worse over time. Unlike the more common form of MS where people experience periods when symptoms flare up and then improve, progressive MS involves a steady worsening of disability^[3].

Progressive MS causes both inflammation and neurodegeneration, which means nerve cells in your brain and nervous system lose their ability to function properly^[1]. The nerve fibers themselves may also be destroyed, not just their protective covering^[4].

Types of Progressive Multiple Sclerosis

There are two main types of progressive multiple sclerosis, and they are sometimes grouped together because they share similar symptoms^[1].

Primary progressive multiple sclerosis (PPMS) is when symptoms get worse from the very beginning of the disease. About 10% to 15% of people diagnosed with MS have PPMS^[5][11]. With PPMS, relapses can happen but they are less common. This means that people diagnosed with PPMS usually experience gradually worsening symptoms from the start, without periods when symptoms clearly improve^[1].

Secondary progressive multiple sclerosis (SPMS) develops in people who initially had relapsing-remitting MS. Relapsing-remitting MS is characterized by episodes when symptoms flare up, followed by periods of recovery. After some time, which is typically around 19 years, approximately 70% of patients with relapsing-remitting MS develop secondary progressive MS^[3]. In this stage, nerve damage accumulates and symptoms gradually worsen. People may still experience some relapses, but periods when symptoms stabilize or go away are less likely to happen^[14].

Symptoms of Progressive MS

The main symptom of progressive MS is the gradual worsening of disability^[4]. Symptoms of progressive MS are not entirely obvious at first but increase in severity over time^[1].

Common symptoms of progressive multiple sclerosis include^[1][4]:

• Vision changes, including double vision or vision loss
• Tingling or numbness in your body
• A squeezing feeling around your chest or abdomen
• Feeling tired or experiencing fatigue
• Difficulty trying to urinate or a feeling of urgency when you need to urinate
• An electrical shock sensation down your back, arms, or legs when you bend your neck forward
• Trouble walking and problems with coordination
• Muscle stiffness or weakness
• Brain fog or difficulty with memory and concentration
• Dizziness or shakiness
• Mood changes or depression
• Sexual dysfunction
• Difficulty controlling the bladder or bowels

Causes and Risk Factors

The exact cause of progressive MS is unknown^[1][4]. Research suggests it could be related to changes in your DNA that make you more likely to have an autoimmune condition. However, genetics only play a small part in MS, so the risk of passing the condition onto your future children is low^[1].

Environmental factors can also play a role in developing MS. An example is exposure to bacteria or viruses^[1]. Since the risk of multiple sclerosis is significantly higher when a parent has been diagnosed with the disease, genetic factors may play a role. The unusual relationship between a person’s geographic location during childhood and the risk of MS later in life suggests there may be environmental factors at work in the disease^[12].

If you have MS, your immune system mistakenly attacks healthy parts of your central nervous system, which causes symptoms^[1].

Most people receive a primary progressive MS diagnosis in their 40s to 50s, though the condition can be present at any age^[1][5]. Patients with primary progressive MS tend to be diagnosed in their mid-to-late 30s^[4]. About equal numbers of men and women are diagnosed with primary progressive MS, whereas other types of MS are more common in women than men^[5].

Diagnosis

There is no single test to confirm or rule out a diagnosis of progressive MS^[1]. A diagnosis of primary progressive MS is often a clinical diagnosis, based on your medical history and the symptoms you are experiencing, rather than on diagnostic tests alone^[5]. Your healthcare provider will make a diagnosis after collecting information from a variety of sources^[1].

After a physical exam and taking your medical history, your healthcare provider may offer tests, which can include^[1][4]:

• An MRI (magnetic resonance imaging) scan to look for damage on your brain and spinal cord
• A lumbar puncture (spinal tap) to find characteristics of MS, like oligoclonal bands commonly found in MS, but which can also be seen in other conditions. They can represent evidence of inflammation involving the brain and spinal cord
• Blood tests to rule out other conditions that have similar symptoms
• An optical coherence tomography (OCT), which is a painless test that scans the nerves in the back of your eye (retina) to detect damage, possibly caused by MS
• Nerve function tests

A neurologist will be looking for a pattern of worsening symptoms due to the slow and progressive loss of nerve cells^[5]. In order to confirm a diagnosis of primary progressive MS, the patient must have a year of consistent progression of the condition, including worsening neurologic function, and meet certain additional criteria^[4].

Possible Complications

Symptoms of progressive MS can lead to various complications^[1][4]:

• Muscle tightness (spasticity)
• Vision loss
• Difficulty controlling your bladder or bowels
• Sexual dysfunction
• Difficulty with memory and problems with thinking
• Changes to your mood
• Muscle weakness or paralysis
• Depression

Treatment Approaches

While there is no cure for progressive multiple sclerosis, treatment options can help slow disease progression and manage symptoms^[14]. Treatment for relapsing-remitting MS has improved dramatically over the last decade, but the therapeutic options for chronic progressive MS, both primary and secondary, are still limited^[3].

For primary progressive MS, only one medication, ocrelizumab (Ocrevus), has been approved by the U.S. Food and Drug Administration for slowing the progression of the disease^[13]. In September 2024, the FDA approved a subcutaneous version of ocrelizumab called Ocrevus Zunovo, which offers a twice-a-year, under-the-skin dosing regimen^[13].

Disease-modifying therapies (DMTs) have been a game changer in improving life expectancy and quality of life for many people with MS. These treatments, which are administered as oral medications, injections, or infusions, can reduce how often patients have a relapse, slow the progression of the disease, and prevent new MS lesions from forming on the brain and spinal cord^[15].

In addition to treating the underlying cause of MS, there are many effective treatments to manage symptoms of the disease. These can include^[15]:

• High-dose corticosteroids to treat acute flare-ups and reduce inflammation
• Muscle relaxants to alleviate spasticity and stiffness
• Physical and occupational therapy

While each person’s treatment plan needs to be individualized, healthcare providers look at many factors including what type of MS a patient has, whether they are planning for pregnancy, how their immune system is functioning, and what their job involves^[15].

Living With Progressive MS

Being diagnosed with progressive multiple sclerosis can be traumatic, but there are ways to improve your quality of life when living with this condition^[13]. A positive attitude can be one of the best ways to handle the changes MS can bring^[16].

Exercise regularly. Exercising is an excellent way to stay fit and manage symptoms. Studies show that physically active people living with multiple sclerosis may experience less severe symptoms^[17]. Exercise offers many benefits, including boosting mood and energy, increasing strength and mobility, reducing fatigue and depression, and improving cardiovascular health^[17]. Medium-intensity aerobics is excellent for those with mild to moderate symptoms. Water exercises, Tai chi, and yoga are also good options^[17].

Eat a healthy diet. A well-balanced diet helps you control your weight, which can lead to a decrease in clinical symptoms and a slower rate of disease progression^[17]. A nutritious diet can reduce fatigue, strengthen your heart, improve your overall health, and help you maintain regular bladder and bowel functions^[17]. While there are no specific diets for people with multiple sclerosis, generally a diet consisting of whole grains, lean meats, fruits, and vegetables is advantageous^[17].

Get enough rest. Take a nap if you need it, but keep it to less than 2 hours. Any longer and you might not be able to fall asleep at night^[16]. Listen to relaxing music before bed and cut out screen time half an hour before you go to bed^[16].

Take care of your mind. If you’re struggling with the disease’s impact on your life, reach out to someone. A mental health professional can listen to what’s troubling you and make a treatment plan to meet your needs^[16]. Support groups give you a place to learn new ways to handle your condition and share how you’re feeling with others who understand what it’s like^[16].

Make modifications to your life. MS comes with a lot of uncertainty, so it may help to take charge of the things in your life that you can control^[16]. Put gadgets to work for you and make home adjustments that can help you manage daily tasks more easily^[16].

Stay positive. While MS is a lifelong condition, healthcare providers can often control it so that patients barely remember they have it. The first year can be very stressful, but many patients report that after the second year, they are still doing everything they want^[15]. With proper treatment and lifestyle adjustments, people with MS can maintain quality of life and continue pursuing their dreams.