Multiple sclerosis (MS) is a chronic disease with no cure. It varies quite a bit from person to person, and not everyone with MS will progress to a severe course of disease.

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

Read on to learn more about final-stage MS, plus some things you may want to consider earlier in MS progression.

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

Some symptoms you may experience in final-stage MS include:

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

Serious complications

It’s also important to be on the alert for serious complications of MS, such as:

Coexisting health conditions can impact your symptoms of MS, quality of life, and length of life. It’s important to seek medical care for all your health conditions.

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 do not work as well for progressive MS as they do for relapsing forms of MS.

That’s why treatment for the final stages of MS focus on managing individual symptoms. This may involve:

Palliative care

Palliative care can be helpful for people with final-stage MS. Palliative care puts the focus on quality of life. This includes physical, emotional, and spiritual well-being. It’s also called supportive care.

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

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

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

As you age, MS can have a greater impact on your quality of life. In the final stage of MS, you may need more assistance 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. This can affect daily care, medical treatments, and end-of-life needs.

If you have a progressive form of MS, it’s worth thinking about your future needs before they’re necessary. Some things to consider are:

You might also want to think about advanced directives. These documents can help you spell out your treatment choices ahead of time in case you cannot speak for yourself later. You can also name a healthcare proxy to act on your behalf.

Research suggests that advance care planning may improve quality of outcomes for people with some chronic health 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’s no cure for MS, but it’s not usually fatal. Progressive MS can lead to severe disabilities and life threatening complications. Aging and coexisting conditions can make symptoms worse.

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

Treatment in the final stages of MS may involve palliative care. That means your healthcare team will focus on easing symptoms and helping you maintain a good quality of life. Palliative care can also help with your emotional and spiritual well-being.

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