Table of ContentsView AllTable of ContentsSymptomsCare Options to ConsiderFinding the Right CareWhat to ExpectFrequently Asked Questions
Table of ContentsView All
View All
Table of Contents
Symptoms
Care Options to Consider
Finding the Right Care
What to Expect
Frequently Asked Questions
Althoughmultiple sclerosis (MS) is not a fatal disease, it is highly unpredictable. The course of MS is different for every individual with the disease. Most people with MS will experience periods of remission, in which their symptoms lessen or disappear, and periods of exacerbation, in which symptoms become worse.
Each exacerbation can lead to more scarring and new symptoms. As symptoms progress, they can affect mobility, cognition, and mental state. Eventually, the disease can reach the end stage at which independent living becomes more difficult.
This article will discuss the symptoms of the final stages ofmultiple sclerosis, how to find the right care during this time, and what to expect.
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Symptoms of the Final Stages of MS
In the final stages of MS, symptoms can become more severe and debilitating. This symptom severity can affect your quality of life and your ability to remain independent.
Symptoms can include:
Complications
In the end stages of MS, symptoms and some treatments can lead to complications. These include:
Considering care options for end-stage MS before they are necessary can help you make a decision that is right for you.
In the end stages of MS, daily activities can become extremely taxing and difficult to do. People with advanced MS may need extra care and trained professionals to help with their needs as independent living becomes more difficult.
Long-Term Care
Long-term care can help people with advanced MS live as independently as possible for as long as possible. As symptoms progress with MS, daily activities such as showering, dressing, and eating may become difficult to do alone.
Long-term care is typically provided in the home and can include personal care such as help with bathing, home care such as someone to help with meals and upkeep of the house, and health care such as physical oroccupational therapy.
Palliative Care
The focus ofpalliative careis on providing a holistic approach to care.
In palliative care, a team of healthcare professionals, including specialists, will work to address the medical, emotional, and social challenges of living with advanced MS. Palliative care can take place at home, in a hospital, a nursing home, or a specialized facility.
Hospice
A person may transition from palliative care tohospicewhen a healthcare provider believes they have six months or less to live. Hospice is much like palliative care in that it provides comprehensive care to the person with advanced MS plus support for family and loved ones.
Hospice can take place at home or in a facility such as a nursing home, hospital, or specialized hospice center. While in hospice, the patient has someone from the hospice team checking in regularly and providing around-the-clock support.
The type of care you need depends on your symptoms, how mobile and independent you are, and your comfort level.
Talking to your primary healthcare provider and MS specialist can help you decide your best options. If you need more support in finding the right care, anMS navigator at the National Multiple Sclerosis Societycan also provide guidance.
Questions to consider when looking for the right care are:
What to Expect During the Final Stages of MS
MS is a highly unpredictable disease, and the final stages will look different for everyone. As symptoms become more complex and complications arise, quality of life can decrease. Independent living may become more difficult.
Certain symptoms, like spasticity, can make it hard to remain mobile and perform daily activities such as getting dressed.
Depressioncaused from changes in the brain itself and from the burden of living with the disease can create a sense of feeling overwhelm. It can affect the desire to continue healthy habits or adhere to a treatment plan. The risk of suicide may also increase.
Cognitive problems can affect skills that may have once been easy. Managing finances, driving, and remembering to take medications can all become difficult. Memory can also be affected.
Life ExpectancyMS is not a fatal disease, however, one study found that the life expectancy for people with MS is seven years shorter than the average life expectancy.
Life Expectancy
MS is not a fatal disease, however, one study found that the life expectancy for people with MS is seven years shorter than the average life expectancy.
Summary
MS is an unpredictable and progressive disease that can worsen over time. As symptoms progress, quality of life can be affected, making it difficult to live independently. People who reach end-stage MS may need to consider different plans of care such as long-term care, palliative care, and hospice.
A Word From Verywell
Living with an incurable and unpredictable disease like MS can be overwhelming. While many people live a long, independent life with the disease, and medications work to slow the disease’s progression, there is no cure.
As symptoms progress it may become more difficult to live independently. Exploring your options now can help better prepare you for the future and allow you to make your wishes known to family and friends so that you can live the best possible life with end-stage MS.
Life expectancy with end-stage MS depends on the severity, type of symptoms, and complications. People whose healthcare providers have recommended hospice have six months or less to live.
Coverage for hospice depends on your health insurance plan. Medicare will sometimes pay for some hospice benefits.
11 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Institute of Neurological Disorders and Stroke.Multiple sclerosis.Ghasemi N, Razavi S, Nikzad E.Multiple sclerosis: pathogenesis, symptoms, diagnoses and cell-based therapy.Cell J. 2017;19(1):1-10. doi:10.22074/cellj.2016.4867National Multiple Sclerosis Society.Advanced care needs.National Institute on Aging.What is long-term care?Latorraca COC, Martimbianco ALC, Pachito DV, et al.Palliative care interventions for people with multiple sclerosis.Cochrane Database Syst Rev. 2018;2018(1):CD012936. doi:10.1002/14651858.CD012936National Institute on Aging.What are palliative care and hospice care?Milligan J, Ryan K, Lee J.Demystifying spasticity in primary care.Can Fam Physician. 2019;65(10):697-703.Kalb R, Feinstein A, Rohrig A, Sankary L, Willis A.Depression and suicidality in multiple sclerosis: red flags, management strategies, and ethical considerations.Curr Neurol Neurosci Rep. 2019;19(10):77. doi:10.1007/s11910-019-0992-1Kalb R, Beier M, Benedict RH, et al.Recommendations for cognitive screening and management in multiple sclerosis care.Multiple Sclerosis Journal. 2018;24(13):1665-1680. doi:10.1177/1352458518803785Lunde HMB, Assmus J, Myhr KM, Bø L, Grytten N.Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.J Neurol Neurosurg Psychiatry. 2017;88(8):621-625. doi:10.1136/jnnp-2016-315238Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC.Mortality in patients with multiple sclerosis.Neurology. 2013;81(2):184-192. doi:10.1212/WNL.0b013e31829a3388
11 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Institute of Neurological Disorders and Stroke.Multiple sclerosis.Ghasemi N, Razavi S, Nikzad E.Multiple sclerosis: pathogenesis, symptoms, diagnoses and cell-based therapy.Cell J. 2017;19(1):1-10. doi:10.22074/cellj.2016.4867National Multiple Sclerosis Society.Advanced care needs.National Institute on Aging.What is long-term care?Latorraca COC, Martimbianco ALC, Pachito DV, et al.Palliative care interventions for people with multiple sclerosis.Cochrane Database Syst Rev. 2018;2018(1):CD012936. doi:10.1002/14651858.CD012936National Institute on Aging.What are palliative care and hospice care?Milligan J, Ryan K, Lee J.Demystifying spasticity in primary care.Can Fam Physician. 2019;65(10):697-703.Kalb R, Feinstein A, Rohrig A, Sankary L, Willis A.Depression and suicidality in multiple sclerosis: red flags, management strategies, and ethical considerations.Curr Neurol Neurosci Rep. 2019;19(10):77. doi:10.1007/s11910-019-0992-1Kalb R, Beier M, Benedict RH, et al.Recommendations for cognitive screening and management in multiple sclerosis care.Multiple Sclerosis Journal. 2018;24(13):1665-1680. doi:10.1177/1352458518803785Lunde HMB, Assmus J, Myhr KM, Bø L, Grytten N.Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.J Neurol Neurosurg Psychiatry. 2017;88(8):621-625. doi:10.1136/jnnp-2016-315238Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC.Mortality in patients with multiple sclerosis.Neurology. 2013;81(2):184-192. doi:10.1212/WNL.0b013e31829a3388
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
National Institute of Neurological Disorders and Stroke.Multiple sclerosis.Ghasemi N, Razavi S, Nikzad E.Multiple sclerosis: pathogenesis, symptoms, diagnoses and cell-based therapy.Cell J. 2017;19(1):1-10. doi:10.22074/cellj.2016.4867National Multiple Sclerosis Society.Advanced care needs.National Institute on Aging.What is long-term care?Latorraca COC, Martimbianco ALC, Pachito DV, et al.Palliative care interventions for people with multiple sclerosis.Cochrane Database Syst Rev. 2018;2018(1):CD012936. doi:10.1002/14651858.CD012936National Institute on Aging.What are palliative care and hospice care?Milligan J, Ryan K, Lee J.Demystifying spasticity in primary care.Can Fam Physician. 2019;65(10):697-703.Kalb R, Feinstein A, Rohrig A, Sankary L, Willis A.Depression and suicidality in multiple sclerosis: red flags, management strategies, and ethical considerations.Curr Neurol Neurosci Rep. 2019;19(10):77. doi:10.1007/s11910-019-0992-1Kalb R, Beier M, Benedict RH, et al.Recommendations for cognitive screening and management in multiple sclerosis care.Multiple Sclerosis Journal. 2018;24(13):1665-1680. doi:10.1177/1352458518803785Lunde HMB, Assmus J, Myhr KM, Bø L, Grytten N.Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.J Neurol Neurosurg Psychiatry. 2017;88(8):621-625. doi:10.1136/jnnp-2016-315238Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC.Mortality in patients with multiple sclerosis.Neurology. 2013;81(2):184-192. doi:10.1212/WNL.0b013e31829a3388
National Institute of Neurological Disorders and Stroke.Multiple sclerosis.
Ghasemi N, Razavi S, Nikzad E.Multiple sclerosis: pathogenesis, symptoms, diagnoses and cell-based therapy.Cell J. 2017;19(1):1-10. doi:10.22074/cellj.2016.4867
National Multiple Sclerosis Society.Advanced care needs.
National Institute on Aging.What is long-term care?
Latorraca COC, Martimbianco ALC, Pachito DV, et al.Palliative care interventions for people with multiple sclerosis.Cochrane Database Syst Rev. 2018;2018(1):CD012936. doi:10.1002/14651858.CD012936
National Institute on Aging.What are palliative care and hospice care?
Milligan J, Ryan K, Lee J.Demystifying spasticity in primary care.Can Fam Physician. 2019;65(10):697-703.
Kalb R, Feinstein A, Rohrig A, Sankary L, Willis A.Depression and suicidality in multiple sclerosis: red flags, management strategies, and ethical considerations.Curr Neurol Neurosci Rep. 2019;19(10):77. doi:10.1007/s11910-019-0992-1
Kalb R, Beier M, Benedict RH, et al.Recommendations for cognitive screening and management in multiple sclerosis care.Multiple Sclerosis Journal. 2018;24(13):1665-1680. doi:10.1177/1352458518803785
Lunde HMB, Assmus J, Myhr KM, Bø L, Grytten N.Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.J Neurol Neurosurg Psychiatry. 2017;88(8):621-625. doi:10.1136/jnnp-2016-315238
Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC.Mortality in patients with multiple sclerosis.Neurology. 2013;81(2):184-192. doi:10.1212/WNL.0b013e31829a3388
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