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Blog: Stories and Insight

Final Stages of Multiple Sclerosis: What to Expect



Multiple sclerosis is a disease that can present differently for those who have it. A MS diagnosis is not a death sentence, because it can be controlled and stay in remission. However, in some cases, worsening symptoms can lead to a number of disabilities. Although the illness is not fatal, complications from MS can contribute to a person’s death.

During the final stages of MS, also known as advanced multiple sclerosis, the patient’s independence may be significantly diminished. The complexity of the individual’s medical issues at this stage requires constant monitoring by a caregiver. It may also be required of the caregiver to provide personal care and assistant with day to day activities they are no longer able to perform.

As previously mentioned, the disease is unpredictable. Not everyone with MS will experience the final stages. However, it is important to have an understanding of what the final stages of multiple sclerosis could look like and to have a full picture of the disease. The best way for those with MS and their loved ones to prepare is to arm themselves with information.

How long can people live with MS?

Modern advances in treatment and lifestyle-wellness plans are helping MS patients live longer. Current observation shows that people with MS have a life expectancy about seven years shorter than those without. On rare occasions, MS can lead to a premature death.

How might my illness progress?

Severe disability is a result of MS that affects approximately 1/3 of those living with the disease. Through walking aides like canes or crutches, many retain the ability to move around. MS treatment can help, but in some individuals the disease may continue to progress.

 

Doctors do what they can to help MS patients, but they cannot predict how MS will advance in one individual. Generally, patients may have long periods exhibiting little to no symptoms, or remission, before relapsing and having another period of illness.

Research shows that certain factors guide the progression of an individual’s illness. The results have shown that people who fare better are often those with:

  • Limited 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.

 


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 (855) 337-1916.

Samaritan is a member of the National Partnership for Healthcare and Hospice Innovation, a network of not-for-profit hospice and palliative providers across the country. If you know someone outside of our service area who is living with advanced illness and can benefit from hospice or palliative care, please call 1 (844)-GET-NPHI (844-438-6744) for a referral to a not-for-profit provider in your area.

 


Individuals whose multiple sclerosis 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

The final stages of Multiple Sclerosis can be challenging as common symptoms become more severe. Should the illness progress to this advanced stage it is important to have the right supports and treatment to reduce the impact on the quality of life.

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.
  • Hearing loss.
  • Problems with concentration, attention, memory, and judgment.

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

  • Osteoporosis or the loss of bone density.
  • Pressure sores or skin wounds caused by lack of movement or long periods in a bed.
  • Swallowing problems can occur and food or liquid can get into the lungs, causing swelling or infection.
  • Severe bladder, kidney, or urinary-tract infections.
  • 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 or an increase in stiffness and resistance as a muscle is moved 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.

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 your 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.  

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 (855) 337-1916.

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.

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.