Advanced multiple sclerosis (MS) can cause physical impairment and cognitive deficits, which affect thinking and mood. Because MS is a progressive disease, the probability of severe impairment increases the longer someone lives with the condition. People with advanced MS experience physical and cognitive MS symptoms more often and more severely, often having multiple symptoms at the same time.

If you or a loved one is living with advanced MS, it’s important to know what symptoms may occur and what you can do to help manage them.

What Is Advanced Multiple Sclerosis?

MS is a chronic, progressive autoimmune disease that affects the central nervous system (CNS) — the brain, spinal cord, and optic nerves. MS gets worse over time due to immune system attacks on the protective myelin sheath surrounding nerve fibers. Damage to the myelin (known as demyelination) causes lesions in the CNS. MS lesions can be seen on MRI scans.

People living with advanced MS generally require more assistance to complete routine daily activities.

Sometimes, despite treatment, MS worsens in severity and causes increasing disability. The disease progresses to advanced MS and then to end-stage MS.

Progressive vs. Advanced Multiple Sclerosis

“Progressive” and “relapsing” describe a pattern or disease course — how MS behaves over time. On the other hand, “advanced” describes a level of severity of MS symptoms at which people become significantly disabled.

MS often starts as relapsing-remitting multiple sclerosis (RRMS), in which symptoms worsen during relapses (exacerbations) and then go away or lessen during periods of remission. In most people, RRMS eventually transitions into secondary progressive MS — symptoms and disability gradually worsen over time without going away. More rarely, MS can have a progressive course from the beginning, without ever having relapses or remissions at early stages. This type of MS is known as primary progressive MS.

Advanced MS is characterized by symptoms that cause substantial physical disability. People with advanced MS require help from caregivers to manage daily activities and needs. Advanced MS may also cause multiple symptoms at once, which can be debilitating. Symptoms of advanced MS can be managed to improve quality of life but aren’t treated with disease-modifying therapies (DMTs). Some symptoms may require care from other specialists as well as a neurologist.

4 Symptoms of Advanced Multiple Sclerosis

MS can affect different areas of the CNS, and each case is unique. In advanced MS, cognitive dysfunction and physical disability can cause a range of symptoms.

Here are some symptoms that may occur in advanced MS.

1. Urinary and Bowel Problems

Bladder problems and bladder control are common among people with advanced MS. The most common urinary problem in people with advanced MS is holding urine, which can lead to incontinence (leaking). Some people with advanced MS have problems emptying the bladder completely. Urine that’s held too long can cause urinary tract infections, including infections in the bladder and kidneys.

People with advanced MS may also experience changes in bowel function, such as constipation, bowel incontinence, and diarrhea. Other MS symptoms, such as muscle weakness and spasticity, fatigue, and chronic pain, can make urinary and bowel problems worse.

2. Speech, Swallowing, and Breathing Difficulties

Nerve damage from advanced MS can lead to muscle weakness that causes speech, swallowing, or breathing difficulties. Weak vocal muscles, an abnormal voice, or hoarseness can be isolating and affect the ability to communicate effectively.

Difficulties with swallowing can also occur with advanced MS and may lead to weight loss or dehydration. Swallowing problems may also cause aspiration pneumonia, a serious complication that can develop when food or liquid gets into the lungs.

Breathing problems may occur due to muscle weakness in the chest and abdomen.

3. Cognitive and Mood Symptoms

People with advanced MS may experience cognitive impairment that affects thinking, reasoning, memory, and decision-making. Emotional well-being may be affected by depression, anxiety, agitation, or mood swings. It’s not uncommon for people with advanced MS to display excessive cheerfulness or have trouble conforming to social norms — for example, they may engage in inappropriate sexual talk or behavior.

At least half of people with MS have a major depressive episode during their disease.

Depression

Clinical depression is common among people living with MS. At least half of people with MS have a major depressive episode during their disease. Neurology research also shows that depression can also be a side effect of some medications used in MS treatment, such as steroids or interferon.

Involuntary Emotional Expression Disorder

Involuntary emotional expression disorder (IEED), also known as pseudobulbar affect, is a mood disorder that affects nearly 10 percent of people with MS. People with IEED experience uncontrollable episodes of laughing or crying, often at inappropriate times.

4. Pressure Sores

A pressure sore is an injury that damages the skin and underlying tissue that occurs due to limited mobility. Also called pressure ulcers or bedsores, these injuries range from mild skin discoloration to severe craters down to muscle and bone. In advanced stages of MS, a person’s skin is more likely to break down due to:

• Lack of or limited movement
• Muscle spasms
• Dehydration
• Desensitization to pain

8 Tips for Living With Advanced MS

Disease-modifying therapies are typically used to treat relapsing forms of MS to slow disease progression. People in advanced stages of MS often switch treatment options, but over time, these drugs can become less effective as MS progresses. Symptom management — including steps to enhance comfort, limit complications, and improve quality of life — is usually the treatment goal for people with advanced and end-stage MS.

Therapies for advanced MS may include complementary treatment, massage, speech therapy, occupational therapy, or physical therapy in addition to DMTs. At an advanced stage, specialized health care professionals and providers may play important roles. For example, palliative care specialists can help maintain comfort and quality of life.

Here are some ways to help manage advanced MS.

1. Keep Your Health Care Team Up to Date

Many symptoms of advanced MS, especially cognitive symptoms of MS, can be managed. Be sure to maintain an open line of communication with your health care team about any uncomfortable, worsening, or new symptoms. They can advise you on options for managing the effects of advanced MS.

Therapies for advanced MS may include complementary treatments, massage, speech, and occupational or physical therapy in addition to DMTs.

For example, your doctor may recommend mental health counseling or consultations with a urologist, who can assess bladder problems or urinary infections.

2. Do Exercises To Build or Preserve Strength and Mobility

Stretching is vital for disabilities that limit movement in the limbs. A physical therapist can help develop an appropriate stretching and exercise program for your particular case of advanced MS. They may also be able to help with respiratory exercises that can help strengthen breathing muscles.

3. Engage in Speech Therapy

Speech therapy can help strengthen the muscles in the tongue and around the mouth to improve the ability to speak and swallow.

4. Use Mobility Aids

Mobility aids, such as walking sticks or a wheelchair, can help a person maintain a sense of independence, get out of bed, and spend time with friends and family.

5. Make Home More Accessible

Home modifications to promote better accessibility can also help keep a person safe from falls or other accidents. An uncluttered environment, for instance, can be easier for someone with advanced MS to manage.

6. Prepare for Bowel and Bladder Accidents

Talk to your doctor about how you can best manage bowel and bladder incontinence. A catheter and bed pads can help prepare for bladder and bowel incontinence and make managing these conditions easier.

7. Embrace the New Normal

Living with advanced MS can be challenging. People who’ve lived with MS for a while say that the best approach is to accept your limitations and find ways to pursue activities you can still enjoy on your own or with friends and family.

8. Connect With Others

If you’re living with advanced MS, it can help to have the support of others who are also navigating the uncertainties and obstacles that come with this condition. Online support groups such as MyMSTeam can help you find ways to better manage advanced MS.

It’s also important to stay connected to the people in your life. Let close friends and family members know what you’re going through and how they can help. Often, loved ones want to be helpful but don’t know what to do.

Find Your Team

MyMSTeam is the social network for people with MS and their loved ones. More than 217,000 members come together to ask questions, give advice, and share their experiences of living with MS.

Do you have advanced MS? What symptoms do you experience? What tips have helped you cope with these symptoms? Share your thoughts in the comments below, or start a conversation on your Activities page.