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Advanced Multiple Sclerosis: Symptoms and Tips for Managing

Posted on May 20, 2021
Medically reviewed by
Joseph V. Campellone, M.D.
Article written by
Nyaka Mwanza

When a person has advanced multiple sclerosis (MS), they experience extreme physical impairment and cognitive deficits. Because MS is a progressive disease, the probability of severe impairment increases the longer a person has lived with MS. People with advanced MS are more likely to have more MS symptoms more frequently and more severely, often experiencing multiple symptoms at the same time. Here’s what to expect, as well as suggestions to help manage advanced MS.

What Is Advanced Multiple Sclerosis?

MS is a chronic, progressive autoimmune disease. This means that over time, it steadily worsens and destroys the protective myelin sheath surrounding the 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 magnetic resonance imaging (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 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.

Symptoms of Advanced MS

Depending on which parts of the CNS are affected and how severely, MS can lead to an array of 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 a longer time period, there may be 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.

Urinary and Bowel Problems

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 often leads 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.

Speech, Swallowing, and Breathing Difficulties

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.

Difficulties swallowing (dysphagia) in people with advanced MS may lead to insufficient caloric intake and risk of dehydration. Dysphagia is also a contributing factor to aspiration pneumonia, a serious complication that can happen when food or liquid gets into the lungs. Decreased mobility can also contribute to the risk of pneumonia.

People with MS are also often more susceptible to infections. Their bodies are less capable of fighting bacteria and viruses. This includes respiratory infections that can quickly become life threatening.

Cognitive and Mood Symptoms

Cognition refers to a person’s knowing, thinking, remembering, and reasoning abilities. People with advanced MS may have more severe cognitive impairment.

Neuropsychiatric changes of MS may include depression, anxiety, agitation, 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.

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. Evidence suggests that MS causes depression by damaging neurons that help control mood. One study 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

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

Pressure Sores

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 reddening) 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:

  • Limited mobility or lack of movement
  • Muscle spasms
  • Dehydration
  • Weakened immune system
  • Desensitization to pain
  • Bowel and bladder incontinence

Tips for Living With Advanced MS

Disease-modifying therapies (DMTs) are the general mainstay of an MS treatment plan for the various types of MS. DMTs such as Ocrevus (ocrelizumab), Gilenya (fingolimod), and Copaxone (glatiramer acetate) are prescribed to slow down disease progression and modulate the immune system.

Oftentimes, people in the advanced stages of MS have tried multiple 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 treatments and interventions. Therapies for advanced MS may include complementary treatments, massage, and speech, 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.

Keep Your Health Care Team Up to Date

Many symptoms of MS, especially cognitive symptoms, can be treated if a person’s doctors know 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.

Do Exercises To Build or Preserve Strength and Mobility

Stretching is vital for mobility impairment. 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.

Engage in Speech Therapy

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

Use Mobility Aids

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.

Make Home More Accessible

Home modifications to promote better accessibility can also help keep a person safe from falls or other accidents.

Prepare for Bowel and Bladder Accidents

A catheter and bed pads can help prepare for bladder and bowel incontinence and can make managing these conditions easier.

Embrace the New Normal

Living with advanced MS can be difficult to accept. People who have 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.

Connect With Others Who Understand

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 or are going through it with you. MyMSTeam is the social network for people with MS and their loved ones. More than 167,000 members come together to ask questions, give advice, and share their experiences of living with MS.

What tips have helped you cope with the symptoms of advanced MS? Share your thoughts in the comments below, or start a conversation on MyMSTeam.

References

  1. Advanced MS — MS Trust
  2. Read More About MS: The Facts — MS Trust
  3. Multiple Sclerosis — Cleveland Clinic Center for Continuing Education
  4. End Stage MS — MS Trust
  5. Caring for Loved Ones With Advanced MS: A Guide for Families — National Multiple Sclerosis Society
  6. Advanced Care Needs — National Multiple Sclerosis Society
  7. Vitamin D and Multiple Sclerosis — Multiple Sclerosis News Today
  8. Bladder Dysfunction — National Multiple Sclerosis Society
  9. Speech & Swallowing — National Multiple Sclerosis Society
  10. Dysarthria and Dysphonia — National Multiple Sclerosis Society
  11. Speak for Yourself — Momentum Magazine
  12. Multiple Sclerosis and Mental Health: 3 Common Challenges — Johns Hopkins Medicine
  13. Multiple Sclerosis (MS): Symptoms, Causes, Diagnosis & Treatments — Cleveland Clinic
  14. Care at Home of the Patient With Advanced Multiple Sclerosis: Part 2 — Home Healthcare Now
  15. Taking the Next Step — Momentum Magazine
  16. Multiple Sclerosis: Overview of Disease-Modifying Agents — Perspectives in Medicinal Chemistry
All updates must be accompanied by text or a picture.
Joseph V. Campellone, M.D. is board-certified in neurology, neuromuscular disease, and electrodiagnostic medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Nyaka Mwanza has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.

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