Multiple sclerosis is a degenerative disorder of the central nervous system. The root cause is unknown, but the immune system is responsible for the nerve damage that occurs.
A coating of a substance called myelin protects nerve fibers. In multiple sclerosis (MS), demyelination occurs. This is the process through which the immune system destroys the myelin coating of nerve fibers.
Myelin insulates and surrounds the core of a nerve fiber, or axon. When damage occurs in the axon, it hinders how signals move along nerves. MS also causes the nerves themselves to degenerate. This can affect movement, speech, and thought processes.
Nearly one million people in the United States currently live with MS, according to the National MS Society. The National Institutes of Neurological Diseases and Stroke estimate that 250,000–350,000 people in the U.S. have MS, but they note that it is difficult to know exactly how many there are.
In this article, we look at the impact of living with MS and how to manage the condition.
Living with MS can be difficult. The condition is unpredictable, and symptoms come and go.
This can make it hard for a person — and those around them — to know what is going to happen.
The ongoing fatigue and pain of the condition can drain energy, sexual dysfunction can affect relationships, and movement and coordination difficulties can impair daily function.
MS can affect people in different ways. Some people experience symptoms that gradually progress, while the symptoms of others develop in stages. In people relapsing-remitting MS (RRMS), symptoms may subside for long periods before returning in a more severe state. If a person has primary or secondary progressive MS, the symptoms will become gradually more severe.
MS is rarely fatal, and most people can expect to have the same lifespan as a person without MS, according to NINDS. A few people will have symptoms that prevent them from walking, talking, and writing, but most people will continue to be able to do these things. In time, however, some may need an assistive device, such as a walking stick.
However, this depends on the type of MS and the treatment they receive.
Around 1% of people will have a rapidly progressing type of MS that is more likely to lead to severe symptoms in a relatively short space of time.
Most people can enjoy a good quality of life with MS, especially if they have appropriate support. However, a person may need to make lifestyle adjustments in order to retain their quality of life.
There is no cure for MS, but treatment is available.
For people with RRMS, a doctor can prescribe medication from the early stages that can reduce the number of flares and may slow the progression of the disease.
Medication, such as steroids, can help reduce inflammation and the impact of a severe attack. Other drugs can help with complications, such as changes in bladder control, fatigue, and itching.
Some lifestyle changes can also help a person manage their condition.
Here are some tips:
- Eat a nutritious, low-fat, high-fiber, and balanced diet. This may help relieve the bowel and bladder control issues that are typical in people with MS and help prevent further health problems, such as high blood pressure. Be sure to consult a doctor before starting a special diet.
- Regular, light exercise can help preserve physical and mental health. A person can adapt exercises to their physical needs. Low-energy activities, such as gardening and cooking, can help maintain exercise and mobility at home. Water exercises and swimming can help improve flexibility and range of motion.
- Keep up with MS treatments, as these can relieve symptoms enough to allow people with the disease to resume daily activities. Monitor symptoms and inform a doctor about any changes or worsening of the condition and any side effects of drugs.
- Cut out or avoid smoking and alcohol consumption. Smoking can speed up the progression of the disease and alcohol can impair the nervous system and interact with MS medications in harmful ways.
- Acknowledge and address the emotional side of the condition. Diagnosis of any chronic condition is a lot to process. Seeking mental support from either family, friends, other people with MS, or a healthcare professional can help an individual navigate the more difficult or restrictive parts of the condition. Find support from others who know what it is like to live with MS through resources such as MS Healthline. This free app provides support through one-on-one conversations and live group discussions with people who have the condition. The app is available to download on iPhone or Android.
- MS can be hard to understand. Share details about the condition with those who are close to you. Let them know more information as you feel comfortable. Strong relationships make for a strong support network. Every person with MS feels differently about sharing news of the condition.
- Caregivers looking after a person with MS need to be aware that it can be exhausting and draining. People providing care for someone with MS should also take steps to look after themselves. This can help a person provide the best support possible.
- Maintain mentally stimulating activities and social interaction to preserve cognitive function. Reading, creative writing, crosswords, watching gameshows, and simply talking to others can improve cognitive processes.
- Manage expectations with your employer. They may need to make adaptations in the workplace to accommodate a person with MS, such as flexible or reduced working hours. Thorough financial planning can help a person with MS seek time away from employment to recuperate while reducing the impact of doing so.
- Speak to an occupational therapist about mobility measures, including adapting the home and knowing about the ways public transport and spaces provide support for less mobile people with the condition.
People with MS can remain symptom-free for many years.
However, living with MS can be both physically and mentally overwhelming when symptoms develop.
Constant fatigue is common for people with MS. This tiredness can impact all aspects of life, including effective brain use and the ability to go out and partake in activities.
The symptoms of MS can cause constant discomfort and disability that limit a person’s ability to go about daily activities.
People with MS may have to attend medical appointments very regularly. They also live with the uncertainty of when the next attack of symptoms may happen.
Together, these reduce a person’s quality of life. The ongoing frustration of such restrictions results in some people with MS developing depression.
Many occupational therapy and relaxation programs are available to help people with MS manage their symptoms.
These programs can help people with MS improve the performance of daily activities despite the limitations imposed by the condition. A range of patient groups is also available to offer support to people living with MS.
Recent research suggests that a protein-rich diet may improve the outlook for MS by reducing inflammation. MS is not itself fatal, but the mortality rate among people with MS is higher than in the general population.
The increased number of deaths occurs due to complications of MS, such as infection, diseases affecting the lungs or heart, or depression leading to suicide.
Several treatments for MS are available, but medical scientists have not yet developed a cure.
Medical treatments typically fall into three main categories:
- Disease-modifying therapy (DMT): These drugs slow down the rate at which the disease worsens and reduces symptom relapses. They do this by affecting the way the immune system works.
- Drugs that help reduce specific MS symptoms: Examples include pain relief medication and laxatives to resolve constipation.
- Injectable steroids: These can help manage the sudden attacks of severe symptoms. These reduce inflammation and can help manage temporary vision loss and muscle weakness.
In addition, people with MS often receive physiotherapy in the form of exercises and massage to help improve muscle function and to relieve pain. An occupational therapist can help an individual with MS use working and social life to manage the condition.
People with MS may require speech therapy to return some parts of speaking to normal function, as well as medical assistance with swallowing.
Since MS can affect many different parts of the body, a variety of specialist doctors usually provide treatment. This team of specialists might involve neurologists, urologists, and psychologists.
For more information on treating MS, click here.
Myelin and nerve damage might occur in several different areas of the brain and spinal cord. For this reason, MS can affect any part of the body.
Typical symptoms of MS include:
- muscle weakness and spasms
- blurred or double vision
- changes in mood
- difficulty with thinking clearly
- loss of control of bladder and bowel function
Muscle weakness and spasms can cause problems with speech, coordination, and balance.
Fortunately, most people with MS do not experience all of these symptoms. The actual symptoms that develop depend on the extent and location of nerve damage. As the amount of damage increases, the symptoms get worse.
Symptoms usually first develop between the ages of 15 and 45 years. A doctor typically diagnoses MS when a person with the disease is in their late twenties or early thirties.
The most common type of MS is relapsing-remitting MS (RRMS). According to the National Multiple Sclerosis Society, around 85 percent of people with MS have this form of the disease.
RRMS involves periods of mild or even absent symptoms, or remission, and relapses, during which symptoms become worse.
Over time, as damage progresses, a person may experience fewer periods of remission and more severe symptoms. When this happens, RRMS has progressed to secondary progressive MS (SPMS).
About half of all individuals with RRMS go on to develop SPMS.
The next most common type of MS is primary progressive MS (PPMS). This form of MS occurs in about 15 percent of people with the disease.
PPMS is often more debilitating. Symptoms get worse over time instead of occurring as sudden attacks with remission periods.
In secondary progressive MS (SPMS), a person will experience a flare, after which symptoms get better. However, after this, the condition gradually worsens.
Most people with MS can expect to live as long as people without MS, but the condition can affect their daily life. For some people, the changes will be minor. For others, they can mean a loss of mobility and other functions.
Learning as much as possible about MS, what it involves, and ways of managing it can help a person feel more in control of their condition and better able to face the changes that may occur.
A person who receives a new diagnosis may not want to tell everyone about it at once, but it is a good idea to inform family and friends when it feels comfortable to do so. This will help people understand the changes that may take place.
Letting an employer know can help them adjust the work environment and schedule to account for any fatigue and discomfort that may occur.
Maintaining low-level physical activity and a low-fat, high-fiber diet can support management of the disease. Acknowledging and addressing the emotional aspects of living with MS can help people with the condition and caregivers cope, as well as helping close family and friends provide a support network.
Charities including The National MS Society offer a wide variety of tools, facilities, and advice to support people with the condition.
What are the best ways to meet other people with MS?
Most large hospitals have support groups for people with MS.
Online support groups and resources are also available through the National Multiple Sclerosis Society.
Seunggu Han, MD Answers represent the opinions of our medical experts. All content is strictly informational and should not be considered medical advice.