Multiple Sclerosis (MS)

What is it?

Multiple Sclerosis (MS) is a chronic neurological disease that affects the central nervous system (CNS)—the brain, spinal cord and optic nerves. MS is thought to be caused by an immune-mediated disorder where the body’s immune system mistakenly attacks healthy tissue in the CNS.

Nearly 1 million people nationwide, and more than 2.3 million people worldwide, are living with an MS diagnosis. Nearly anyone at any age may develop MS, but researchers have observed patterns:

Onset is most likely to occur between the ages of 20 and 50.
Women are three times as likely as men to develop MS.
The disease is also more common in regions with moderate climates and in people of northern European descent, though it can be seen in individuals of all ethnicities.

MS is not contagious. It is not directly inherited, but studies indicate that there are genetic and environmental factors that may make certain people more susceptible to it.

MS is unpredictable. From the type of symptoms, to their severity, to the progression of the disease itself, experiences with MS can vary greatly from patient to patient, as well as in the same patient over time.

What happens when you have MS?

MS disrupts connections between the brain and spinal cord from the rest of the body. For example, when a healthy body experiences a sensation – touching something hot – our nerves send a signal to the brain with this information. The brain evaluates the information and communicates back to the nerve the way in which our body should respond to that stimulus. An individual with MS may not be able to feel this sensation fully due to injury to the CNS.

With MS, the immune system causes inflammation that damages the CNS’s myelin — the tissue that acts as insulation for nerve fibers in the brain and spinal cord. The disease also damages the nerve fibers themselves, as well as the cells that make myelin.
Damage to myelin or nerve fibers alters nerve impulses – what the body and brain depend on to communicate. Damaged myelin or nerve fibers can change how messages are sent and received throughout the nervous system.
The damage causes scar tissue, which gives the disease its name – multiple areas of scarring or multiple sclerosis.
Depending on the site of inflammation, these blockages can result in some of the symptoms of MS, which may include blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness and extreme fatigue. Individuals with MS may experience some, all, or none of these symptoms – it’s different for each person.

What are the symptoms?

Common symptoms include:

Fatigue. Mild to severe tiredness that can make it hard to function at home or work. 80% of people experience it, and it may be the most prominent symptom even in someone who has few other symptoms.
Vision problems. Vision changes are often one of the first symptoms of MS. The optic nerve is a common area for inflammation. Because it is responsible for carrying vision signals to the brain, visual disturbances are common. They range from haziness and blurred vision to more serious visual impairment. Often, visual symptoms lessen or disappear after a period of weeks, upon remission. Blindness in MS is rare.
Weakness. Caused by nerve damage and unused muscles.
Spasticity. Stiffness and involuntary muscle spasms.
Movement. Difficulty in controlling the strength and precision of movements, so that holding things is a problem; balance and coordination may be impaired (also called ataxia).
Sensory. Numbness, tingling and sensitivity to heat or cold.
Pain and itching.
Dizziness. Sometimes this is a feeling of lightheadedness, unsteadiness or being off balance. Other times it may be vertigo (a sensation that the room is spinning).
Bladder and bowel problems. Bladder control, urinary tract infections, and constipation.
Sexual problems. Can be due to nerve damage, fatigue, spasticity, or psychological factors.
Cognitive changes. Learning and processing information, problem solving, organization, and focus can all be affected.
Clinical depression. The most severe type of depression is one of the most common MS symptoms.
Emotional changes. Mood swings, irritability, uncontrollable laughing or crying.
Walking (gait). Resulting from the combined effects of other symptoms, such as weakness, spasticity, balance issues, fatigue.

How is MS diagnosed?

There is no single test available to clearly identify MS. Diagnosis of MS includes a thorough medical history, a neurologic exam, and tests such as bloodwork, spinal fluid analysis, and Magnetic Resonance Imaging (MRI). MRI aids in diagnosis by producing a picture of the brain or spinal cord to show areas of inflammation and scarring that are typical with MS. Alternative diagnoses must also be excluded.

Diagnosing MS can be challenging and often takes time, so it’s wise to schedule an appointment with the primary care physician as soon as possible. Once diagnosed, the disease management can begin, which includes treatment that may slow progression of the disease.

What’s the prognosis?

While no known cure for MS exists, it is not a fatal disease, and people diagnosed with MS have the same life expectancy as the general public.

According to the National Institute of Neurological Disorders and Stroke (part of the National Institutes of Health), the vast majority of people with MS are mildly affected. In the worst cases, however, MS can render a person unable to write, speak, or walk.

It is often difficult to predict the course of MS because it varies so much from person to person. Current research focuses on identifying more precise indicators of disease activity.

Managing the disease is key. This includes managing relapses, symptoms, medical therapies, physical therapies, alternative medicine, and other treatments.

What are the different types of MS?

No two cases of MS are exactly the same, but clinicians often classify the clinical presentation into four different types of multiple sclerosis.

Types of MS*

Type	Symptoms	Outlook
Clinically Isolated Syndrome (CIS)	A single neurologic attack Example of neurologic symptoms include vision loss, weakness in the arm or leg, or numbness in the arm or leg	Partial to complete recovery from the attack Does not worsen with time May be the only attack ever experienced. Or it may be the first MS attack.
Relapsing – Remitting MS (RRMS)	Most common – 85% of people with MS are diagnosed with this type Characterized by recurrent attacks (relapses) that result in worsened neurologic symptoms/function at least temporarily (weeks to months) due to new inflammation in the CNS Symptoms depend on the area of the CNS that is affected	Recovery may be complete or partial from the attacks Disability can develop from incomplete recovery from attacks Over time, may advance to Secondary-Progressive MS
Primary – Progressive MS (PPMS)	Continual progression of disease and disability from beginning No distinct remissions Commonly this is progressive difficulty with walking, but it can also include upper body weakness, urinary/bowel dysfunction, and cognitive changes	Occasional stabilization of disability and minor, temporary improvement
Secondary -Progressive MS (SPMS)	Onset similar to relapsing-remitting course Over time develops into a more progressive course as described above	Continued accrual of disability despite lack of attacks Mental or physical function may be diminished without recovery between attacks

*Recognized differently among national and international organizations, and physicians. Adapted from Multiple Sclerosis International Federation (2021), National Multiple Sclerosis Society (2021), Healthline (2021).

How is MS treated?

Much research is being conducted to find new approaches to the treatment of MS. Since there is no “cure,” treatment tends to center on remission, or stopping the attacks from occurring. Treatment focuses on:

Helping to bring about remission of symptoms
Lengthening the remission period so that the flare-ups are less likely to occur
Changing the course of the disease so progression slows
Providing symptom relief

Clinical research suggests medications can have the most impact if they are taken as soon as the disease is diagnosed. Stabilization of a patient’s symptoms as well as MRI imaging that shows a lack of active inflammation in the CNS are markers of effective therapy.

Medications

For treating MS and its symptoms, the Food and Drug Administration (FDA) has approved numerous medications that have shown in clinical trials to reduce the number of relapses, delay progression of disability, and limit new disease activity (as seen on MRI). Treatments continue to evolve as medications are developed.

Additionally, specific medications are prescribed to help improve recovery time from relapses. For example, corticosteroids shorten the duration of relapses and help speed up recovery from a relapse. Effectiveness can vary from individual to individual, however. And due to well-documented side effects, corticosteroids cannot be used on an ongoing basis.

Lastly, there are medications used that can help treat the chronic symptoms of MS that do not alter the disease course. These medications are often used in other neurologic conditions. One example is anti-spasticity drugs, which are often effective in relieving muscle spasms.

Meds: Method options, side effects

Depending on the therapy recommended by the physician, medications may be administered orally, or by infusion or injection. Some caregivers and individuals with MS may find it difficult to administer medications by injection and may be less likely to stay on a medication schedule.

Also, it is important to bear in mind that many MS medications can have significant side effects.

Be sure to consider method of delivery and side effects when selecting a medical intervention program that works for you and your loved one.

Available drugs, clinical trials

Checking with organizations that specialize in MS (see resource list) is a good way to keep up to date on new drugs to treat MS, upcoming clinical trials and recent FDA drug approvals.

A comprehensive overview of current medications for treating MS and its symptoms can be found at the website of National Multiple Sclerosis Society: https://www.nationalmssociety.org/Treating-MS/Medications

Beyond medications

Medication is not the only way to manage the symptoms of MS.

Catheter management programs may benefit people experiencing urinary distress. A neurologist or urologist can help determine if this option is suitable.
Physical therapy or rehabilitation programs can help increase muscle strength, improve walking ability, reduce pain, and relieve muscle spasms.
Strength training and exercise can be beneficial according to research. Results from clinical trials have suggested that individuals who lifted weights and exercised experienced less fatigue, greater immune function and decreased inflammation.
Complementary and alternative medicine (CAM) encompasses a host of interventions and non-medical approaches, including food and diet, exercise, stress management, vitamin D, and cooling strategies, among others. Many people combine one or more CAMs with conventional medical treatment.

Research: Get involved

Research on MS is robust, and there are many projects and opportunities for participation – from clinical trials to surveys, genetic studies to tissue donation.

Research information compiled by National Multiple Sclerosis Society: https://www.nationalmssociety.org/Research/Participate-in-Research-Studies
MS: Hope Through Research, from the NIH’s National Institute of Neurological Disorders and Stroke: https://www.ninds.nih.gov/disorders/patient-caregiver-education/hope-through-research/multiple-sclerosis-hope-through-research
Information from the NIH’s U.S. National Library of Medicine’s database, ClinicalTrials.gov: https://clinicaltrials.gov/ct2/results?recrs=&cond=Multiple+Sclerosis&term=&cntry=&state=&city=&dist=

How does MS affect cognitive function?

About 50% of people with MS will develop some cognitive problems, including a slowed ability to think, reason, concentrate or remember.

Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities.

Yet, it is important to remember that for the person experiencing MS, cognitive changes – whatever the severity – may be just as devastating as physical changes; perhaps even more so. Cognitive difficulties are common among people who have had the disease for a long time, but they also may appear early on, occasionally from the onset of MS.

Among those individuals affected by cognitive disturbance, the most common problems are:

Memory recall, particularly remembering recent events
Slowness in learning and processing new information
Difficulty with reasoning, such as analyzing a situation, making a plan and follow through
Poor judgment
Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation

Cognitive problems associated with MS are not related to level of physical disability and can affect people with few physical symptoms of MS. In addition, cognitive problems can develop rapidly during a flare-up of the disease. In these cases, the cognitive problems can decrease as the disease moves into remission.

Not like Alzheimer’s

It is important to note that cognitive impairment in MS bears little resemblance to the intellectual decline in Alzheimer’s disease. There are important differences between the two.

It is rare for people living with MS to experience severe, progressive cognitive decline.
Cognitive impairment in MS is typically mild.
Cognitive impairment in MS may stabilize at any time.

Open family communication

Individuals with MS and their families should be aware of potential cognitive problems. Recognizing and learning about certain impairments can reduce misunderstandings about a person’s apparent forgetfulness, carelessness or seeming indifference.

Through open communication, families can be supportive and help the person cope with the changes that they are experiencing. Understanding symptoms related to MS can also help to reduce fears about losing one’s abilities. Sometimes, it is helpful to start talking about cognitive and other changes that might occur as a result of MS before they happen, so the individual with MS and the family can be sensitive to and aware of potential changes.

Talk with the doc

Discuss suspected cognitive impairment with the person’s doctor to explore possible causes or triggers.

In some cases, depression, side effects from medications and even interactions between medications can mimic cognitive problems and can be treated separately.
A neurologist can perform a brief evaluation to test for severe cognitive deficits. A neuropsychologist who has expertise in diagnosing and treating MS may be recommended to perform a more complete evaluation to test for subtle cognitive changes.
If cognitive problems are found, the neuropsychologist may assist individuals and their families in coping by working on rehabilitation and strategies to help with cognitive changes.

Strategies to help with cognitive issues may include memory aids or using memory tricks:

Writing down all appointments
Making check lists
Using visual images or rhymes to help remember

Practicing concentration and focus when listening will also minimize distractions and help the person retain new information.

How can we keep track of appointments and all the health information and advice shared?

When you or your loved one are being tested or receiving treatment for MS, you may seek the expertise of a number of different health professionals. Because people who have MS experience different symptoms and potentially many stages, you may interact with what might seem like a great many physicians, social workers, physical therapists and other health care providers.

Take Note

It can be overwhelming to coordinate care and to find appropriate resources and professionals who are trained in MS care. Keeping a notebook, or “health journal” can help you track:

Interactions with health care providers
Treatments administered
Medications prescribed
Upcoming appointments and questions you have for the clinician at that visit

Using a notebook to jot down notes from appointments and conversations, test instructions or results (and what they mean), medications – as well as your own questions – will be valuable information you can refer back to as needed. It also will provide a personal record of care.

What do we need that we may not ask about?

Support

It is important both for people with MS and their loved ones to get support when dealing with the disease. Support groups, which provide safe, caring environments to share experiences and challenges, are available for both individuals with MS and those who care for them. Topics discussed may include:

Adjustment
Coping
Disease course
Family issues
Frustrations
Insurance
Medication
Resources

Counseling also may be helpful for individuals, couples or families who are learning to cope with chronic illness or periodic health crises.

Caring for the caregiver

Family and friends who are providing assistance to a loved one with MS may feel stressed and are at increased risk of poor health, depression and isolation.

It is important for the health of the family caregiver as well as the health of the person with MS for the caregivers to take some time off (or “respite”) from caregiving, to get enough sleep and have a support system of their own.

Respite care can be arranged with the help of family members, friends, community organizations, volunteer services, independent living centers or home care agencies. Caregivers who have time for themselves give better care to their loved ones.

Where can I read more on this topic?

National Multiple Sclerosis Society: Library and Education Programs: https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs

National Multiple Sclerosis Society: Books:
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Books

Healthline: 13 Great Books That Shine a Light on MS: https://www.healthline.com/health/multiple-sclerosis/books-that-shine-light-on-ms

Healthline: Caring for Someone with MS: https://www.healthline.com/health/multiple-sclerosis/support

National Multiple Sclerosis Society: Caring for Loved Ones with Advanced MS – A Guide for Families: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Caring-for-Loved-Ones-with-Advanced-MS-A-Guide-for-Families.pdf

This is overwhelming. What resources are available to help us?

Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org
FCA CareNav™: https://fca.cacrc.org
Caregiver Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, MS, ALS, head injury, Parkinson’s, and other debilitating brain disorders that strike adults.