Multiple sclerosis (MS) is a chronic, incurable disease. It varies a lot from person to person, and not all people with MS will progress to a serious course of the disease.

For some people, MS can lead to serious disabilities and life-threatening complications. This is called the end stage or the end stage MS.

Read on to learn more about late stage MS, as well as some things you may want to consider earlier in the progression of MS.

As MS progresses, you may see your symptoms increase in severity, or you may find that you have more symptoms at the same time. Symptoms may last longer or become permanent.

Some symptoms that you may experience in the late stage of MS include:

  • problems with balance, coordination and posture
  • limited mobility or paralysis
  • blood clots and pressure sores due to lack of mobility
  • cramps, stiffness, muscle spasms, tremors
  • pain in muscles, nerves, and joints
  • severe bladder and bowel problems
  • breathing problems due to weak respiratory muscles
  • get respiratory infections like pneumonia more easily
  • difficulty swallowing, which can lead to choking and feeding problems
  • speech problems
  • vision loss
  • cognitive difficulties
  • tired
  • depression

Serious complications

It is also important to be on the lookout for serious complications of MS, such as:

Co-existing health issues can impact your MS symptoms, quality of life, and length of life. It is important to see a doctor for all of your health concerns.

In 2017, the Food and Drug Administration (FDA) approved ocrelizumab (Ocrevus) as the first disease-modifying therapy for people with progressive MS.

As the National MS Society explains, disease-modifying therapies don’t work as well for progressive MS as they do for recurrent forms of MS.

Therefore, treatment for the later stages of MS focuses on managing individual symptoms. It may involve:

Palliative care

Palliative care can be helpful for people with terminal MS. Palliative care emphasizes quality of life. This includes physical, emotional and spiritual well-being. It is also called supportive care.

A study published in 2018 looked at trends in palliative care for people with MS. The results showed that palliative care services for people hospitalized with MS increased significantly from 2005 to 2014, possibly due to the Affordable Care Act.

The researchers suggested that for people hospitalized for MS, earlier referral to palliative care might have been more effective.

MS is rarely fatal. However, research suggests that the life expectancy of people with MS may be about 7 years shorter than that of the general population.

As you get older, MS can have a greater impact on your quality of life. In the final stage of MS, you may need more help with personal care and performing routine daily tasks.

Studies show that 40 to 70 percent of people with MS develop cognitive difficulties at some point. When cognitive function is severely affected, it becomes difficult to make important decisions. It can affect daily care, medical treatment, and end-of-life needs.

If you have a progressive form of MS, it is worth considering your future needs before they are needed. Some things to consider are:

You can also think of advanced guidelines. These documents can help you narrow down your treatment options ahead of time in case you can’t speak for yourself later. You can also appoint a health care attorney to act on your behalf.

Research suggests that advance care planning may improve the quality of outcomes for people with certain chronic conditions.

You can speak with a doctor or legal representative to get started. For more information on advance directives, visit Dying Matters and the National Institute on Aging.

There is no cure for MS, but it is usually not fatal. Progressive MS can lead to severe disability and life-threatening complications. Aging and coexisting conditions can make symptoms worse.

As MS progresses, you may need more help with personal care and doing daily chores. Independent living may no longer be possible.

Treatment of the later stages of MS may involve palliative care. This means that your healthcare team will focus on easing symptoms and helping you maintain a good quality of life. Palliative care can also contribute to your emotional and spiritual well-being.

If you have progressive MS, it may be helpful to discuss these topics with your doctor. Exploring assistive technology and personal care options now can help you better prepare when the need arises.


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