When a person has advanced multiple sclerosis (MS), they experience extreme physical impairment and cognitive deficits. Cognition refers to a person’s knowing, thinking, remembering, and reasoning abilities. Because MS is a progressive disease, the probability of severe impairment increases the longer a person has lived with the condition. People with advanced MS are more likely to have additional MS symptoms more frequently and more severely, often experiencing multiple symptoms at the same time.
Here’s what to expect, as well as eight suggestions to help manage advanced MS.
MS is a chronic, progressive autoimmune disease. This means that over time, it steadily gets worse and destroys the protective myelin sheath surrounding nerve fibers, a process called demyelination. MS causes lesions and permanent damage to the neurons of the central nervous system (CNS). The signs of MS can be seen in MRI scans of the brain and spinal cord.
Sometimes, despite trying several combinations of the most novel therapies, MS progresses in severity, complexity, and increased disability from primary or secondary progressive MS to advanced MS, and then to end-stage MS. People living with advanced MS generally require more assistance to complete routine daily activities. They will also need greater caregiver investment, a diversity of specialized health care professionals, and increased socioemotional support (empathy, concern, trust, acceptance, encouragement, or caring).
Depending on which parts of the CNS are affected and how severely, MS can lead to cognitive dysfunction, neurological impairment, and physical disability over time. Several different risk factors — from age to vitamin D levels and sun exposure — can have an impact on disease progression.
As MS progresses and a person lives with the disease for longer, there may be an exacerbation (worsening) of symptoms common in the early stages of MS (such as muscle spasticity), as well as several new symptoms (for example, incontinence). In addition to more severe symptoms, advanced MS tends to bring more chronic symptoms, which may occur at the same time.
Bladder problems are common among people with advanced MS. Nerve damage may lead to deficient bladder control. The most common urinary issue in people with advanced MS is storage, leading to incontinence. Less frequently, problems completely emptying the bladder occur. Urine that is held too long before being eliminated can lead to urinary tract infections including infections of the bladder and kidneys.
People with advanced MS also frequently experience changes in bowel function, including constipation, bowel incontinence, and diarrhea. Other MS-related changes (such as muscle weakness, paralysis, decreased activity, fatigue, and acute or chronic pain) can all make bowel problems worse.
Damage to certain areas of the brain can lead to speech and swallowing difficulties. Speech problems such as dysarthria and dysphonia can be isolating. Difficulties communicating verbally can be frustrating for the person with MS and their family members or caregivers and may also be caused by weakness in the muscles used for speech, swallowing, and breathing.
Dysphagia (difficulties with swallowing) in people with advanced MS may lead to not getting enough calories and to dehydration. Dysphagia can lead to aspiration pneumonia, a serious complication that can happen when food or liquid gets into the lungs. If a person doesn’t move around enough, it can also contribute to the risk of pneumonia.
People with advanced MS may have more severe cognitive impairment. Neuropsychiatric changes of MS may include depression, anxiety, agitation or anger, and mood swings. It’s not uncommon for people with advanced MS to display euphoria (excessive cheerfulness). They may also display disinhibition (inability to conform to social norms) — for example, engaging in inappropriate sexual talk or behavior.
Clinical depression is common among people living with MS. At least half of people with MS have a major depressive episode during their disease. Evidence suggests that MS causes depression by damaging neurons that help control mood. One study from Home Healthcare Now found that people with MS were 7.5 times more likely to attempt suicide than the general population. Depression can also be a side effect of some medications used in MS treatment, such as steroids or interferon.
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.
A pressure sore is an injury that damages the skin and underlying tissue. Also called pressure ulcers or bedsores, they range from mild (minor skin discoloration) to severe (deep craters down to muscle and bone). In advanced stages of MS, a person’s skin is more likely to break down due to:
Disease-modifying therapies (DMTs) are generally used in an MS treatment plan for the various types of MS. DMTs such as ocrelizumab (Ocrevus), fingolimod (Gilenya), and glatiramer (Copaxone) are prescribed to slow down disease progression and modulate (stimulate or suppress) the immune system.
Oftentimes, people in advanced stages of MS have tried many different DMTs and therapies that didn’t work well or have stopped working for them. Symptom management — including steps to enhance comfort, limit complications, and improve quality of life — is generally the treatment goal for people with advanced MS and end-stage MS.
Advanced MS often calls for other treatment options and interventions. Therapies for advanced MS may include complementary treatments, massage, speech, and occupational or physical therapy in addition to DMTs. At an advanced stage of MS, health care providers other than a neurologist play a very important role. For example, a palliative care specialist can focus on maintaining comfort and a high quality of life.
Many symptoms of MS, especially cognitive symptoms, can be treated if your neurology provider knows about them. Be sure to maintain an open line of communication with your treatment team so they can advise you on the options available for managing the effects of advanced MS.
For example, your doctor may recommend counseling or regular meetings with a urologist who can assess for urinary infections.
Stretching is vital for disabilities that limit movement in the limbs. A physical therapist can help develop the right stretching and exercise regimen for a person with advanced MS. They may also be able to help with respiratory exercises that can help strengthen breathing muscles.
Speech therapy can help strengthen the muscles in a person’s tongue and around the mouth to improve the ability to speak and swallow.
Mobility aids, such as walking sticks or a wheelchair, can help a person maintain their sense of independence, get out of bed, and engage with friends, family, and life overall.
Home modifications to promote better accessibility can also help keep a person safe from falls or other accidents.
A catheter and bed pads can help prepare for bladder and bowel incontinence and can make managing these conditions easier.
Living with advanced MS can be difficult to accept. People who’ve lived with MS for a while say that the best thing is to find ways to reconnect with the activities and roles that you valued before your diagnosis.
Navigating the progression of MS can involve facing unknowns and new obstacles. It may help to have the support of others who have been there before or who are going through it with you. MyMSTeam is the social network for people with MS and their loved ones. More than 195,000 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 the conversation on MyMSTeam.