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Final Stages of Multiple Sclerosis: What to Expect

Multiple sclerosis is an unpredictable disease that varies from person to person. In many cases, MS can remain controlled or stay in remission. In others, symptoms can worsen and cause various disabilities. While the illness is not typically fatal, complications from MS can contribute to a person’s death.

However, the right care can help patients and families cope with multiple sclerosis’s final stages, and have the best possible quality of life during this difficult time.

A person in the final stages of MS – also called advanced multiple sclerosis – is dependent on others for their personal care and daily activities. The person has complex medical issues, cannot be left alone for very long, and is rarely able to go out.

This advanced condition is not common, but it’s important that people with MS and their loved ones understand and prepare for it, in case these needs arise.

How long can people live with MS?

People with MS are living longer than in the past, which is likely due to improved treatments and healthy lifestyle changes by patients. On average, people with MS live about seven years less than people without MS. In rare cases, MS can rapidly become fatal.

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What is Multiple Sclerosis?

Multiple sclerosis (MS) is a disease of the central nervous system. It disrupts communication between the brain and other body parts, causing a wide range of symptoms – from extreme fatigue and numbness to impaired vision and paralysis.

The effects of MS vary from patient to patient and can change over time. Symptoms can get better, worse, or even disappear.

Medical advances are helping to reduce the impact of MS and improve patients’ lives.

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How might my illness progress?

Most people with MS do not become severely disabled. Two-thirds of patients remain able to walk, though many will need an aid, such as a cane or crutches. Treatments can help manage MS, but in some cases the disease will worsen anyway — regardless of what the patient or their physicians do.

Doctors cannot predict how MS will advance in a given person. In some cases, for instance, patients have long periods of remission – with few or no symptoms — between bouts of illness (known as relapses, attacks, or exacerbations).

Certain factors may play a role in how a person’s illness progresses, according to research. For instance, people who fare better are often those with:

  • few relapses or attacks in the first several years after diagnosis
  • long periods between relapses
  • full recovery from attacks
  • symptoms that are sensory, such as tingling, numbness, or vision problems
  • neurological exam results that are near normal after five years

People whose disease may progress more quickly or severely are often those with:

  • early onset of tremor, coordination problems, or difficulty walking
  • frequent attacks and incomplete recoveries
  • early development of neurological abnormalities, such as blurry vision or muscle weakness
  • more lesions visible on MRI in early stages of illness (MS causes hardened patches of tissue – or lesions – to form in multiple places within the central nervous system)

Complications During Multiple Sclerosis’s Final Stages

If your illness progresses to an advanced stage, you may experience more severe challenges. The good news is that the right supports and treatments can help stave off these problems or reduce their impact.

If your symptoms interfere with your regular activities, a variety of technologies, devices, and home modifications can increase your autonomy. Complex rehabilitation technology (CRT), for example, is considered medically necessary, and can be covered by some health insurance. This can include customized wheelchairs, seat cushions, positioning systems, and head and trunk support systems. Rehabilitation therapists can advise you and your family in this area.

These common symptoms may develop or worsen during the final stages of MS:

  • vision problems, including blurriness or blindness
  • muscle weakness
  • difficulty with coordination and balance
  • problems with walking and standing
  • feelings of numbness, prickling, or pain
  • partial or complete paralysis
  • difficulty speaking
  • tremors
  • dizziness
  • hearing loss
  • problems with concentration, attention, memory, and judgment
  • depression

Other issues may also arise during multiple sclerosis’s final stages, including:

  • This loss of bone density can be caused by lack of weight-bearing exercise such a walking, and by treatment with corticosteroid medication.
  • Pressure sores. These skin wounds are caused by lack of movement or long periods in a bed or wheelchair. If left untreated, they can quickly lead to a severe, whole-body infection.
  • Aspiration pneumonia. Swallowing problems can allow food or liquid into the lungs, causing swelling or infection in the lungs.
  • Severe bladder, kidney, or urinary-tract infections. These can be caused by chronic urinary problems.
  • Bowel problems, such as constipation or incontinence.
  • Pain. This can include a wide range of sensations, from itching, burning, or aching to sharp, shock-like pain.
  • Pulmonary complications. MS can weaken the muscles that control the lungs. Such respiratory issues are the major cause of sickness and death in people in the final stages of MS.
  • Spasticity. This increase in tone in a muscle group causes stiffness and resistance as the muscle is moved. It can impair movement and cause pain and other problems.
  • Lack of appetite or dehydration, which can result from swallowing problems or other effects of MS.
  • Suicide. People with MS are more likely to become depressed and to take their own life, compared to the general population and those with other chronic illnesses. If you think you or your loved one may be depressed, contact your healthcare provider right away.
  • Altered levels of consciousness. The person may become confused, drowsy, or unresponsive due to the effects of MS, their medications, infection, lack of fluids, poor nutrition, or other causes.

Did you know?

 

More than 2.3 million people worldwide are affected by MS. MS is not contagious. Genetic factors may play a role in who develops the disease.

Other health conditions and MS

Overall, people with MS have more co-existing health conditions — called comorbidities – than are found in the general population. The most common comorbidities among people with MS include high blood pressure, heart disease, diabetes, chronic lung disease, fibromyalgia, depression, anxiety, and bipolar disorder.

These conditions can contribute to a more rapid progression of MS, a reduced quality of life, and a shorter lifespan. Therefore, it’s important to address these comorbidities throughout the course of the person’s illness. Continue seeing your primary care doctor to identify and treat any co-existing conditions. Your neurologist can also help determine whether a problem is caused by your MS or if it’s a separate condition.

How hospice care can help

A person in the final stages of MS — or any other serious illness — can qualify for hospice care if they have a life expectancy of sixth months or less. Hospice focuses on relieving symptoms and enhancing comfort, so the patient can have the best possible quality of life each day. It provides a wide range of physical, social, emotional and spiritual supports to both patients and families.

People can receive hospice care wherever they are living: at home, in a nursing or assisted living facility, or in the hospital. In addition, some hospice organizations (including Samaritan) operate inpatient hospice centers. These are homelike facilities that provide around-the-clock hospice care to patients with more complex needs.

Care is provided by a team of trained professionals and volunteers, with 24/7 access to caregivers as needed. Most health insurance, including Medicare, Medicaid, and private insurance, cover hospice.

Want to learn more about hospice care at home in South Jersey?
Please click here.

When is it time for hospice?

Many people with MS live for years with significant health challenges, and there is no exact way to determine a person’s prognosis. Nevertheless, certain issues can indicate that it’s time to seek hospice support, including:

  • significant breathing difficulties
  • substantial changes in thinking or functioning abilities
  • multiple ICU (intensive care unit) stays and shorter periods of stability
  • hospitalizations that lead to infections
  • urinary tract infections that trigger sepsis (a dangerous response by the body to infection)
  • severe lack of nutrition
  • severe (stage 4) pressure sores
  • other life-threatening complications

If you live in South Jersey and have questions about the final stages of multiple sclerosis or hospice care for your loved one, please call Samaritan at (800) 229-8183.