What to expect with advanced MS
When damage affects the myelin sheath, it can cause a wide range of symptoms throughout the body.
Some people develop mild symptoms, and multiple sclerosis (MS) is rarely fatal. However, for some people, the symptoms can be severe.
MS develops in stages. Most people never experience the advanced stage and will likely remain mobile. The National Multiple Sclerosis Society note that 2 in 3 people with MS may never lose the ability to walk.
However, for some people, symptoms get progressively worse. In fact, some people may experience symptoms more often than not. Advanced MS can severely affect a person's ability to function.
There is currently no cure for MS, but emerging treatments show promise for slowing its progression.
Advanced MS
In time, a person with MS may need additional help.
If MS reaches an advanced stage, a person may experience a loss of mobility and other life-altering symptoms. They may no longer be able to speak, write, or walk, and they may need dedicated care to meet their needs.
MS is not a fatal condition, except in the very rare cases when it progresses rapidly. The National Multiple Sclerosis Society explain that MS can shorten a person's life by up to 7 years, however.
That said, according to the National Institute for Neurological Diseases and Stroke (NINDS), a person with MS is likely to have roughly the same lifespan as a person without the condition.
Recent advances in medicine contribute to offering people with MS a normal lifespan and quality of life.
Click here to learn more about life expectancy for people with MS.
Symptoms
The symptoms and progression of MS vary among people. There is no clear timeframe for how symptoms develop, or which symptoms will appear.
People with severe symptoms of MS may experience any of the following:
- pain in the muscles, nerves, and joints
- spasms, stiffness, and muscle cramps
- fatigue
- difficulty breathing
- tremors, unsteadiness, or problems with coordination
- numbness and tingling
- sensory changes
- inflammation of the lungs
- bowel or bladder incontinence
- constipation
- kidney and urinary tract infections
- paralysis
- loss of upper and lower body mobility
- weakness and dizziness
- difficulty chewing or swallowing
- speech difficulties
- problems with memory and thinking
- emotional disturbances, such as depression, mood swings, and anger
- pressure sores, if a person is unable to move alone
- vision loss or prolonged double vision
- hearing loss
- headaches
- seizures
- osteoporosis, from a lack of mobility
In some cases, there may also be a risk of suicidal ideation and suicide attempts.
The changes that MS brings can be life-altering, affecting both quality of life and relationships with others. These changes can also affect the lives of loved ones and caregivers.
Coping with the challenges
Receiving appropriate care can help a person enjoy a good quality of life.
MS can affect a person's mental health, and some with the condition may develop depression. Also, experiencing difficulty with thinking and memory can lead to frustration, anger, fear, and possibly guilt.
People with MS may also have concerns about finances and the need for home adaptations, such as to allow wheelchair access.
The National Multiple Sclerosis Society hotline (1-800-344-4867) can advise on many practical issues that people may face.
Caregivers should be aware of these possible thoughts and experiences. Developing a better understanding of what the person is experiencing can help them offer a better level of care. Providing care for a person with a chronic condition can be challenging, too. Caregivers should also ensure that they take time for themselves.
Taking respite or inviting a friend or family member to share the caregiving for a while can help a caregiver maintain their own mental and physical well-being.
For people caring for a loved one with MS, the National Multiple Sclerosis Society offer a useful brochure that gives details on how to cope with many aspects of advanced MS.
In this article, find out more about mood swings and MS.
Learn more, take control
Employers can often arrange for special access and flexible conditions.
Learning as much as possible about a chronic condition can help a person feel more in control of their situation.
Examples include:
- Learning about assistive devices: These and other technology can help a person stay active and productive.
- Finding out about assistance before the need arises: Waiting until difficulties arise can add to the stress of arranging additional help, such as assisted living, and can make it hard to find a suitable place.
- Talking to family or employers about options: It may be possible to arrange access and flexible working, which can enable a person to continue in employment for longer. Family members can often help out with practical tasks if they know what a person needs.
- Joining local MS support groups: These may offer advice, organize social and other events, and help people feel less isolated.
- Finding out about new treatments: A person may decide to speak to their doctor about switching drugs.
Managing advanced MS
Many services are available to meet the needs of those living with advanced MS.
Medical care
Drug treatment can help reduce the frequency and severity of symptom flares. For a person with later-stage MS, a doctor may prescribe mitoxantrone (Novantrone).
Many other drugs can help relieve symptoms and complications, which may range from urinary problems to issues with sexual health.
Pain relief medication and steroid injections may also help someone with severe symptoms, including vision loss, according to the National Multiple Sclerosis Society.
Each person's case and need for treatment will be different. A doctor will advise on the best options for an individual at any time.
A doctor can also help a person access physical therapy, occupational therapy, and other types of support. If it becomes difficult for a person to live at home and take care of themselves, assisted living or residential care may be an option.
What are the options for managing an MS flare? Learn more here.
Lifestyle therapies
A person with severe symptoms may still benefit from making some healthful living choices, such as:
- being outside as much as possible
- doing exercises that are suitable for a person in a wheelchair
- following a healthful and varied diet, which can help prevent obesity, cardiovascular problems, and other complications
- trying massage and heat treatment, which may help alleviate pain and stress
- swimming and hydrotherapy may help ease pain
Although MS is not usually fatal, it can impair a person's quality of life significantly. Taking steps to maintain relationships and interests can help boost a person's mood and other aspects of their health.
Care and support
Sometimes, a person needs additional help when living with advanced MS. This may include palliative care, help in the home, or other forms of care.
Palliative care
Palliative care aims to help a person feel more comfortable and enjoy the best possible quality of life during an advanced stage of MS or another health condition.
A network of doctors, nurses, and other healthcare specialists can offer palliative care.
This type of care can take into account physical, emotional, spiritual, and social needs. It can also provide support for both the person with MS and their family and friends.
Home care
Rehabilitation services can help a person stay active.
Many people with MS will continue to live in their own home, but as symptoms progress, they may need extra help. Home care may suit younger people who are mentally alert but have difficulty carrying out everyday physical tasks.
The person may have a network of family and friends and can benefit from socializing and joining in with activities that are mentally stimulating.
Home care can help those who are no longer able to access a care facility as often as they need. It can also help preserve their quality of life.
Home care will involve devising an individualized care plan that involves the person with advanced MS, a healthcare professional, and often their loved ones or caregivers.
Services may include:
- skilled nursing care
- social services
- assistance with daily activities and household duties
- help with childcare
- rehabilitation services
Adult day programs
Adult day programs often focus on activities that promote emotional and physical well-being, including activities that people can participate in and enjoy at any level of physical functionality.
In this way, people with advanced MS can participate in stimulating activities they enjoyed before their condition worsened and learn new hobbies that accommodate the physical changes they have experienced.
Assisted living arrangements
Assisted living provides ongoing practical support and medical supervision for a person with advanced MS and other conditions that affect a person's quality of life.
Some assisted living services include:
- 24-hour staff presence
- assistance with activities of daily life
- coordination of care and provision of rehabilitation services
- medication management
- recreational activities
- meals
- housekeeping and laundry services
Younger people do not usually require assisted living. It is most likely to be useful for older adults who are mobile but need help with some activities. The person will usually stay in this type of accommodation for around 24 months.
Approaches to assisted living will vary depending on where a person lives. A doctor or other healthcare professional can provide more information about local services.
Nursing homes
Nursing homes are facilities where a person can live if they are unable to receive care at home but do not require admission to the hospital.
The staff in a nursing home provide nursing care, medical care, rehabilitative therapies, and other specialist services.
Hospice care
A person may need hospice accommodation if they have received a terminal diagnosis or medical notification of a 6-month life expectancy.
Hospice programs provide comfort measures and support in dealing with the emotional, spiritual, physical, and practical issues relating to a condition.
A hospice can help a person if their condition becomes more severe. It can also provide respite time for caregivers.
Types: Which ones can become severe?
There are four types of MS, which we cover below. Some are more likely than others to become severe.
Clinically isolated syndrome
A person with clinically isolated syndrome (CIS) experiences symptoms that are typical of MS but may occur only once.
For a diagnosis of CIS, the symptoms must last at least 24 hours and not be due to another cause. If they return at a later date, a doctor may diagnose MS. However, a person does not meet all of the criteria for a full MS diagnosis if such symptoms occur only once.
If a person experiences CIS, a doctor may prescribe medication to prevent further symptoms and a progression to relapsing-remitting MS (RRMS).
If the symptoms occur only once, the condition will not become severe.
RRMS
RRMS involves periods of exacerbations, or relapses, and periods of remission, when there is a complete or almost total recovery. It is possible to then experience another flare, with clearly defined episodes of new symptoms.
Around 80% of people with MS have a diagnosis of RRMS.
During remission, the person will not notice any progression of the condition, though research has found that lesions can continue to develop at this time.
Taking disease-modifying therapy drugs can help prevent the progression of RRMS, especially if a person takes them from the early stages.
RRMS is less likely to become severe than the progressive types, but it may do so over time.
Primary progressive MS
Primary progressive MS (PPMS) progresses steadily, without clear remissions or flares. The symptoms worsen over time, and a person is unlikely to experience significant recovery.
Around 10–20% of people with a diagnosis of MS have PPMS. As a progressive form of the condition, it is more likely than CIS or RRMS to lead to severe symptoms.
Around 1% of people with MS have a type that progresses rapidly. They may need to begin aggressive or experimental treatment to control their symptoms, according to the NINDS.
There is currently no effective treatment to prevent the progression of PPMS, but trials are taking place to assess the safety and effectiveness of a new drug called idebenone, which may help prevent tissue damage.
Secondary progressive MS
In secondary progressive MS, a person will have a severe worsening of symptoms at onset, which will then disappear or abate. After this, symptoms return gradually and become progressively more severe.
People with progressive forms of MS are more likely to develop severe symptoms and need assisted living and additional support.
Outlook
Receiving a diagnosis of MS can be worrying, because although most cases of MS are mild, it can affect a person's life significantly, and the damage that occurs can sometimes be severe.
However, help is available in the form of adult day programs, assisted living arrangements, home care, and more.
New treatment options are proving effective at slowing the progression of some forms of the condition. In addition, advances in MRI technology have made it possible to get a diagnosis sooner than before, so that treatment can start at an earlier stage.
A person with a diagnosis of MS should speak to their doctor about all the treatment and lifestyle options available that can help them maintain a good quality of life.
