Multiple sclerosis, commonly referred to as MS, is a disease that affects the central nervous system (brain and spinal cord). MS can cause nerve damage that results in disability.
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."
In people with MS, the immune system attacks 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.
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What is end stage multiple sclerosis?
As with many diseases, multiple sclerosis can become so severe and progressive that it becomes what is referred to as "late" or "end stage."
Severely affected individuals typically lose physical independence due to a lack of mobility and other life-altering symptoms. Those severely affected by MS often require help to meet their needs.
People who are severely affected by MS may experience the following symptoms:
People who are severely affected by MS may find that their mobility is reduced.
- Pain affecting the muscles, nerves, and joints
- Spasms, stiffness, and cramping of the muscles
- 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
People who are severely affected by MS may experience life-altering changes and a reduction in their overall quality of life. This can lead to social isolation.
Fortunately, there are many services available to meet the needs of those living with end stage MS. These services include the following.
Those with MS may access palliative care services provided by a network of doctors, nurses, and other specialists. The National Multiple Sclerosis Society describe palliative care as "a multi-disciplinary approach to healthcare, encompassing the physical, emotional, social, and spiritual care of people with serious illnesses."
This type of care aims to provide extra support for the patient and their family to provide the best possible quality of life. The National Multiple Sclerosis Society also state that palliative care is appropriate "at any age and at any stage of an illness, and can be provided along with treatments that are meant to cure."
According to the National Multiple Sclerosis Society, home care "is intended to provide an individual who is living at home with individualized services that are developed collaboratively with him/her and the family to foster health and quality of life."
Home care services may include:
- Skilled nursing care
- Social services
- Assistance with daily activities and household duties
- Rehabilitation services
Adult day programs
According to the National Multiple Sclerosis Society, adult day programs are often built around therapeutic activities:
"Like seniors, younger participants with MS enjoy activities that promote cognitive, physical, social and emotional well-being, and positive involvement in daily life. They want to engage in activities that reflect their needs, interests, functional levels, and abilities. Activities that emphasize one's abilities and can be enjoyed in spite of physical impairments are most therapeutic."
Assisted living arrangements
According to the National Multiple Sclerosis Society:
"The goal of assisted living is to provide a residential environment and consumer-directed services that foster quality of life, right to privacy, choice, dignity and independence. It is intended to provide quality services, individualized for residents and developed collaboratively with them, to support the resident's decision making to the maximum extent possible."
Some assisted living services include:
- A 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
Some people with end stage MS may be cared for at a nursing home.
Nursing homes are facilities for people who are unable to be cared for within their homes but do not require a hospital admission.
Nursing home staff typically provide residents with nursing care, medical care, rehabilitative therapies, and other specified services.
Those who are enrolled in hospice will typically need to be determined terminally ill or that they will die within 6 months of enrollment.
Hospice programs provide patients with comfort measures, as well as support in dealing with the emotional and practical issues surrounding their impending death.
Types of multiple sclerosis
There are four types of MS:
Clinically isolated syndrome
Clinically isolated syndrome (CIS) is what the National Multiple Sclerosis Society call "characteristic of MS." However, people with CIS fail to meet all of the diagnostic criteria for MS.
This condition lasts for at least 24 hours. The presence of CIS and brain lesions raises the risk of the person going on to develop relapsing-remitting MS. CIS without brain lesions is a lower risk for going on to develop 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 affected people undergo periods of exacerbations (relapses) and recovery (remission).
The National Multiple Sclerosis Society describe this condition as "clearly defined attacks of new or increasing neurologic symptoms."
RRMS is diagnosed in nearly 85 percent of newly diagnosed multiple sclerosis patients. During remission, people with MS do not experience any progression of their disease. They may also experience partial or complete disease recovery at certain times.
Primary progressive MS (PPMS)
PPMS is described by the National Multiple Sclerosis Society as "worsening neurologic function (accumulation of disability) from onset of symptoms, without early relapse or remissions."
Nearly 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 a person's neurological function. SPMS often affects how mobile people are.
Symptoms of multiple sclerosis
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:
Headaches are one common symptom of MS.
- 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
Certain complications of MS do exist and include:
- Muscle complications such as stiffness and spasms
- Bowel, bladder, or sexual dysfunction
- Changes in mental status (forgetfulness, mood swings, depression and others)
- Osteoporosis - a condition where the bones become weak and fragile
- Pressure sores
- Inflammation of the lungs
- Severe bladder or kidney infections
Healthcare teams should be able to provide people with MS with information on the local supportive services that are available.