The National Multiple Sclerosis Society describe MS as "an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body."
The disease develops in stages and, though many cases never reach end-stage MS, the resulting disabilities can be extremely disruptive if it reaches this most severe stage. This article will help you or a family member prepare for end-stage MS.
Although the disease is not curable, there are options available to provide comfort and quality of life for people with severe MS.
In people with MS, the immune system attacks myelin, the protective covering surrounding the nerves. This abnormal immune response disrupts communication between the brain and body and can eventually lead to permanent nerve damage and disability.
- In multiple sclerosis, the immune system attacks the myelin sheaths that cover the nerves.
- End-stage symptoms of MS can include muscle weakness and loss of mobility, pressure sores, and cognitive issues.
- The condition needs to be managed with ongoing care, and the individual will often require assistance in day-to-day living.
- There are four types of MS.
End-stage multiple sclerosis
MS can progress to a severity at which individuals typically lose physical independence. It can cause a loss of mobility and other life-altering symptoms. Those severely affected by MS often require dedicated care to meet their needs.
The average life expectancy of someone with MS is between 5 and 10 years lower than someone without the condition.
End-stage MS can result in loss of mobility.
People who are severely affected by MS may experience the following symptoms:
- pain affecting the muscles, nerves, and joints
- spasms, stiffness, and muscle cramps
- sensory changes
- bowel or bladder incontinence, urinary tract infections, or constipation
- upper and lower body mobility limitations and weakness
- difficulty chewing or swallowing
- speech difficulties
- problems with memory and thinking
- emotional disturbances, such as depression, mood swings, and anger
- pressure sores
End-stage MS may trigger life-altering changes and a reduction in quality of life. This can lead to social isolation.
There are many services available to meet the needs of those living with end-stage MS.
Those with MS may require access to palliative care services provided by a network of doctors, nurses, and other specialists.
Palliative care is a multi-disciplinary treatment, taking into account physical and emotional needs, as well spiritual and social care for people who are undergoing a serious, life-changing condition.
This type of care aims to provide extra support for the patient and their family for the best possible quality of life. Palliative care is not only helpful in end-stage conditions, but also alongside treatment at any age and any stage of a disease.
Home care is designed for people who are too sick or immobile to access a care facility as often as they need.
It can provide individualized care that involves the collaboration between a person with advanced MS and a healthcare professional, and home care can help preserve quality of life.
These services may include:
- skilled nursing care
- social services
- assistance with daily activities and household duties
- rehabilitation services
Adult day programs
Adult day programs often focus on activities that promote emotional and physical well-being, including activities that can be enjoyed and participated in despite any physical impairment.
These help people with advanced MS partake in stimulating activities they enjoyed before having the condition as well as learning new hobbies that accommodate their more physically inhibited lifestyle.
Assisted living arrangements
The condition cannot be cured, but the correct care can help return some quality of life to a person with MS.
Assisted living provides on-going practical support and medical supervision for a person with end-stage MS and other conditions that dramatically affect quality of life.
Some assisted living services include:
- 24-hour staff
- assistance with activities of daily living
- coordination of care and provision of rehabilitation services
- medication management
- recreational activities
- housekeeping and laundry services
Nursing homes are facilities for people who are unable to receive care at home but do not require hospital admission.
The staff in a nursing home will provide residents with nursing care, medical care, rehabilitative therapies, and other specified services.
Those who are enrolled in hospice will typically need to have received a terminal diagnosis or medical notification of a 6-month life expectancy.
Hospice programs provide patients with comfort measures, as well as support in dealing with the emotional, spiritual, physical, and practical issues surrounding the fatal outcome of the condition.
The symptoms of MS vary from person to person. There is no clear timetable for how symptoms develop. Each person with MS will experience relapses and remissions at their own rate.
Common symptoms of MS include:
- limb numbness or weakness
- pins and needles
- changes in sensation
- tremors, unsteadiness, or problems with coordination
- vision loss
- prolonged double vision
- breathing or swallowing problems
- slurring of speech
- hearing loss
Complications of multiple sclerosis
MS can cause cognitive issues and memory lapses.
MS can complicate in a range of ways, including:
- muscle problems, such as stiffness and spasms
- bowel, bladder, or sexual dysfunction
- changes in mental status, including forgetfulness, mood swings, and depression
- pressure sores, due to not moving around enough
- inflammation of the lungs
- severe bladder or kidney infections
Healthcare teams should be able to provide information to people with MS on the local services that are available.
There are four types of MS.
Clinically isolated syndrome
Clinically isolated syndrome (CIS) is what the National Multiple Sclerosis Society calls "characteristic of MS." However, people diagnosed with CIS do not meet all of the criteria for a full MS diagnosis.
This condition lasts for at least 24 hours. The presence of CIS and brain lesions raises the risk of a person progressing to relapsing-remitting MS. Without any accompanying brain lesions, CIS presents a lower risk for developing MS.
Progression to MS can be delayed by beginning disease-modifying therapy in the earliest stages of CIS.
Relapsing-remitting MS (RRMS)
RRMS is a condition in which people undergo periods of exacerbations, or relapses, and remission, known as recovery. These tend to flare up in clearly defined attacks of new symptoms.
RRMS is diagnosed in nearly 85 percent of people newly diagnosed with MS. During remission, people with MS do not experience any progression of their disease. They may also experience partial or complete recovery from the disease at certain times.
Primary progressive MS (PPMS)
PPMS progresses steadily, without a series of exacerbations and recoveries. The condition deteriorates over time without recovery.
Only about 15 percent of those who are diagnosed with MS experience PPMS.
Secondary progressive MS (SPMS)
SPMS is a progressive condition experienced by those with RRMS. It is characterized by the continued worsening of brain and nerve function.
This type of MS often affects how much people can walk around.