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Advanced multiple sclerosis (MS) can lead to more physical disability and changes in thinking, memory, and mood. Because MS can change over time, some people notice their symptoms becoming more limiting as they age. In advanced MS, physical symptoms and problems with thinking may happen more often or at the same time, but this varies from person to person.
If you or a loved one is living with advanced MS, it can help to know what symptoms may occur and what steps you and your care team can take to address them.
MS is a chroic (long-term) condition in which the immune system mistakenly attacks the central nervous system (CNS). This system includes the brain, spinal cord, and optic nerves (the nerves that help you see).
Over time, these attacks can cause MS symptoms to slowly get worse. They damage the myelin (protective coating) that covers nerve fibers. Damage to this coating, called demyelination, creates lesions (areas of damage) in the brain and spinal cord. These lesions can often be seen on MRI scans, a type of test that uses magnets and radio waves to take detailed pictures of the CNS.
Even with treatment, MS can still change over time, and symptoms may slowly become more limiting. Some people develop advanced MS, and a smaller number go on to end-stage MS.
“Progressive” and “relapsing” describe a pattern or disease course — how MS behaves over time. “Advanced MS” means that MS symptoms have become more serious.
MS often starts as relapsing-remitting multiple sclerosis (RRMS), in which symptoms worsen during relapses (also known as flares) and then go away or lessen during remission.
In most people, RRMS eventually changes into secondary progressive MS (SPMS). In SPMS, symptoms and disability gradually get worse over time and usually don’t fully go away. How quickly MS changes is different for each person. Less often, MS slowly gets worse right from the start, without early phases where symptoms flare up and then improve. This type of MS is called primary progressive MS (PPMS).
Advanced MS happens when symptoms cause serious physical problems and make it hard to move around or do everyday activities. People with advanced MS need help from caregivers to manage daily activities and needs.
Advanced MS may also cause many symptoms at once, which can make daily life more difficult. Symptoms of advanced MS can be managed to improve quality of life, but aren’t usually treated with disease-modifying therapies (DMTs). Some symptoms may require care from other specialists as well as a neurologist.
MS can affect different areas of the CNS, and each case is unique. In advanced MS, cognitive dysfunction (problems with thinking) and physical disability can cause a range of symptoms.
Here are some symptoms that people living with advanced MS may experience.
Bladder problems are common among people living with MS, and they can become more severe as the condition progresses. In advanced MS, some people may have trouble holding urine, which can lead to incontinence (leakage). Others may have difficulty fully emptying their bladder. When urine stays in the bladder too long, it increases the risk of urinary tract infections (UTIs), including infections of the bladder and kidneys.
Changes in bowel function are also common in advanced MS. These may include constipation, bowel incontinence, or, less frequently, diarrhea. Other MS symptoms — such as muscle weakness and spasticity, fatigue, or chronic pain — can make bladder and bowel issues more challenging to manage.
In advanced MS, nerve damage can lead to muscle weakness that affects speech, swallowing, or breathing.
Weakness in the muscles used for speech may cause changes in voice quality — such as hoarseness or a soft, breathy voice — making it harder to communicate. This can contribute to feelings of frustration or isolation.
Dysphagia (swallowing difficulties) can lead to unintended weight loss, dehydration, or poor nutrition. In some cases, food or liquids may accidentally enter the airway instead of the stomach — a condition called aspiration. This can lead to aspiration pneumonia, a potentially serious lung infection.
Muscle weakness in the chest or abdomen may also affect breathing. Some people with advanced MS may feel short of breath or have trouble coughing effectively, which can increase the risk of respiratory infections.
People with advanced MS may experience cognitive impairment can affects thinking, reasoning, memory, and decision-making. Emotional well-being may be affected by depression, anxiety, agitation, or mood swings.
Some people with advanced MS may sometimes seem overly cheerful or act in ways that don’t quite fit the situation. For example, they may say or do things that others see as inappropriate, including sexual comments or behavior.
Clinical depression is common among people living with MS. At least half of people with MS have a major depressive episode during the course of their disease. Neurology research also shows that depression may be a side effect of some medications used in MS treatment, such as interferon.
Involuntary emotional expression disorder (IEED), also called 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.
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 deep wounds down to muscle and bone.
In advanced stages of MS, a person’s skin is more likely to break down due to:
DMTs 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 make you feel more comfortable, 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 treatments, such as massage, speech therapy, occupational therapy, or physical therapy, in addition to DMTs. At more advanced stages, different healthcare professionals may be more involved in your care. For example, palliative care specialists focus on helping people feel as comfortable as possible and supporting their quality of life.
Here are some ways to help manage advanced MS.
Many symptoms of advanced MS, especially cognitive symptoms, can be managed. Be sure to maintain an open line of communication with your healthcare team about any uncomfortable, worsening, or new symptoms. They can give you options for managing the effects of advanced MS.
For example, your doctor may recommend mental health counseling or consultations with a urologist, who can assess bladder problems or urinary infections.
Stretching is vital for disabilities that limit movement in the limbs. A physical therapist can help develop an appropriate stretching and exercise program to reduce spasticity and loosen tight muscles. They may also be able to help with respiratory exercises that can help strengthen breathing muscles.
Speech therapy can help strengthen the muscles in your tongue and around your mouth, which may make it easier to speak and swallow. A speech-language pathologist can also teach you strategies to pace your speech and communicate more clearly and comfortably.
Mobility aids, such as walking sticks or a wheelchair, can help people maintain a sense of independence, get out of bed, and spend time with friends and family.
Home modifications to promote better accessibility can also help keep a person safe from falls or other accidents. An uncluttered environment, for example, can make it easier for someone with advanced MS to manage and increase mobility.
Talk to your doctor about how you can best manage bowel problems and bladder incontinence. A catheter and bed pads can help you prepare for accidents and make managing these conditions easier.
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.
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. In-person or online support groups like MyMSTeam can help you find others who understand, and who may have more tips to share.
It’s also important to stay connected to your loved ones. Let close friends and family members know what you’re going through and how they can help. Often, people want to be helpful but don’t know what to do.
On MyMSTeam, people share their experiences with MS, get advice, and find support from others who understand.
What tips have helped you cope with symptoms of advanced MS? Let others know in the comments below.
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