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Life with MS: Unpredictable symptoms can be a roller-coaster

Multiple Sclerosis

In Multiple Sclerosis (MS), the immune system attacks the protective covering (myelin) on nerve fibers in the body. As these protective “sheaths” of myelin break down, the nerves are exposed. This causes communication problems between the brain and the rest of the body. Symptoms – such as movement problems, vision problems, dizziness, fatigue, tingling or pain — may come and go (called “relapsing-remitting” MS), or become gradually worse (“progressive” MS).

For some, MS can greatly impact quality of life and be disabling. For many, it is possible to manage symptoms and make lifestyle changes to cope with it – such as reducing stress, managing fatigue and reducing exposure to heat.

Although MS has no cure, treatments may help speed recovery from attacks, modify the course of the disease and manage symptoms. Clinical researchers are seeking to better understand MS and how to treat it. Read on to learn more.

If you have MS, we would like to hear from you.

  • Take our brief online survey to be considered for an upcoming clinical trial.*
  • We also invite you to join our MS Team online patient community to connect with others facing this condition.

*If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation. Compensation for study-related travel costs may also be provided.

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Causes & Symptoms

What causes MS to develop?

Although the causes of MS are not yet fully understood, a combination of genetics and environmental factors are believed to play a role. It is considered an autoimmune disease that affects the central nervous system.

Who gets MS?

Multiple Sclerosis Some risk factors make some people more likely to develop MS than others.

  • Age: MS can develop at any age, but usually affects people between 20 and 40.
  • Gender: Women are more than 2-3 times as likely as men to have relapsing-remitting MS.
  • Genetics: Having a parent or sibling with MS increases the risk of developing it.
  • Viruses: Several different viruses have been linked to MS, including Epstein-Barr, which causes infectious mononucleosis.
  • Race/ethnicity: Caucasian people, particularly of Northern European descent, are at highest risk of developing MS. People of Asian, African or Native American descent have a lower risk.
  • Climate: MS is far more common in temperate climates, including Canada, the northern United States, New Zealand, Southeastern Australia and Europe.
  • Vitamin D: Having low levels of vitamin D and low exposure to sunlight is associated with a greater risk of MS.
  • Autoimmune diseases: People with thyroid disease, type 1 diabetes or inflammatory bowel disease have a slightly higher risk of developing MS.
  • Smoking: Smokers have 1.5 times the risk of developing MS as nonsmokers.

Sources: 1. Multiple Sclerosis Foundation Q&A 2. Ther Adv Neurol Disord. 2012 Jan; 5(1): 13–22.

What are the warning signs of MS?

Common warning signs of MS include:

  • Sudden decrease in, blurred, or double vision
  • Numbness or tingling in body or limbs
  • Changes in balance or coordination
  • Weakness in arms or legs
  • Heat sensitivity (which may trigger the above)

If you or someone you know has these symptoms, it is important to discuss them with a healthcare provider.

What are the main symptoms of MS?

Signs and symptoms of MS vary greatly from one person to the next, and over the course of the disease. Depending upon where the affected nerves are located, common symptoms may include:

Movement problems, such as:

  • Numbness or weakness in one or more limbs, typically on one side of the body at a time, or the legs and trunk
  • Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (known as “Lhermitte sign”)
  • Tremor, lack of coordination or unsteady gait

Vision problems, such as:

  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Prolonged double vision
  • Blurry vision

Other symptoms, such as:

  • Slurred speech
  • Fatigue
  • Dizziness
  • Tingling or pain in parts of the body

What complications are associated with MS?

People with MS may also develop:

  • Muscle stiffness or spasms
  • Paralysis, typically in the legs
  • Problems with bladder, bowel or sexual function
  • Mental changes, such as forgetfulness or mood swings
  • Depression
  • Epilepsy

Sources: 3. Multiple Sclerosis Foundation Q&A 4. Ther Adv Neurol Disord. 2012 Jan; 5(1): 13–22.


Progression

Multiple Sclerosis MS varies greatly from one person to the next. Different names are used to classify the disease and to manage it.

  • The first episode of symptoms lasting at least 24 hours is called “clinically-isolated syndrome” (CIS) and considered to be probable MS.
  • To be considered MS, at least two separate neurological episodes (relapses) must occur, with evidence of lesions, at different timepoints.
  • Most people with MS have “relapsing-remitting” symptoms, with periods where new symptoms (relapses) develop over days or weeks, and then improve partially or completely. The quiet periods (remission) can last months or even years.
  • Small increases in body temperature can temporarily worsen signs and symptoms of MS. These aren’t considered disease relapses.
  • About 60-70% of people with relapsing-remitting MS eventually develop a steady progression of symptoms, with or without periods of remission, known as “secondary-progressive” MS. The worsening of symptoms usually includes problems with mobility and gait. The rate of disease progression varies greatly among people with secondary-progressive MS.
  • Some people with MS have a gradual onset and steady progression of signs and symptoms without any relapses. This is known as “primary-progressive” MS.

Over time, a person’s classification may change. The state of their MS may be described with one of these terms:

  • Active – Having relapses of neurological symptoms, or new or enlarging lesions visible on MRI.
  • Inactive/Stable – No apparent relapse or progression is noted.
  • Worsening – Having an increase in neurological symptoms or disability as a result of either relapses or progression of the disease.

Source: 1. Multiple Sclerosis Foundation Q&A


Diagnosis

How is MS diagnosed?

There are no specific tests for MS. Instead, other conditions are ruled out and a thorough medical history and examination is conducted. This may include:

  • Blood tests – to check for possible other causes of symptoms. Tests to check for specific biomarkers linked to MS are being developed to help diagnose the disease in the future.
  • Spinal tap – where a small sample of fluid is removed from the spinal canal for analysis. The sample can be used to help rule out infections and other conditions, or to show abnormalities in antibodies associated with MS.
  • Magnetic resonance imaging (MRI) – to produce detailed images of the brain and blood vessels. A contrast agent is injected intravenously to highlight areas where MS is present (active) on your brain or spinal cord. These lesions indicate the disease is in an active phase.
  • Evoked potential tests — to record the electrical signals produced by the nervous system in response to stimuli. Visual stimuli or electrical stimuli may be used, in which you watch a moving visual pattern, or short electrical impulses are applied to nerves in the legs or arms. Electrodes measure how quickly the information travels down the nerve pathways.

Source: 2. Multiple Sclerosis Foundation Q&A


Treatment

How is MS treated?

  • Treatment of MS is focused on speeding recovery from attacks, slowing progression of the disease and managing symptoms.
  • Because much of the immune response associated with MS occurs in the early stages of the disease, aggressive treatment as early as possible can reduce the relapse rate and slow the formation of new lesions.
  • Many of the disease-modifying therapies for MS carry significant health risks. Selecting the right therapy depends on careful consideration of many factors, including duration and severity of disease, effectiveness of previous MS treatments, other health issues, cost, and child-bearing status.
  • In milder cases of MS, treatment may not be necessary.

Multiple Sclerosis

Medical treatments for MS include:

  • Corticosteroids (e.g., oral prednisone and intravenous methylprednisolone) — to reduce nerve inflammation during MS attacks.
  • Plasma exchange (plasmapheresis) – a procedure in which the liquid portion of part of the blood (plasma) is removed and separated from the blood cells. The blood cells are then mixed with a protein solution (albumin) and put back into your body. This treatment may be used if symptoms are new, severe and haven’t responded to steroids.
  • Ocrelizumab (e.g., Ocrevus) — a disease-modifying therapy (DMT) approved for both primary-progressive MS and relapse-remitting MS, given by intravenous infusion, which may slightly reduce the relapse rate, slow the chances of progression and slow worsening of disability.
  • Beta interferons — medications injected under the skin or into muscle to reduce the frequency and severity of relapses. During treatment, blood tests are taken to monitor liver enzyme levels, which may become elevated.
  • Glatiramer acetate (e.g., Copaxone, Glatopa) — a medication injected under the skin to help block the immune system’s attack on myelin.
  • Fingolimod (e.g., Gilenya) — a once-daily oral medication used to reduce relapse rate. Heart rate must be monitored for 6 hours after the first dose because the heartbeat may be slowed.
  • Dimethyl fumarate (e.g., Tecfider) – a twice-daily oral medication used to reduce relapses.
  • Teriflunomide (e.g., Aubagio) — a once-daily oral medication to reduce relapse rate. This medicine is harmful to a developing fetus and therefore women who may become pregnant should use appropriate contraception.
  • Siponimod (e.g., Mayzent) — a once-daily oral medication to reduce relapse rate and help slow progression of MS. It’s also approved for secondary-progressive MS. This medicine is harmful to a developing fetus and therefore women who may become pregnant should use contraception when taking this medication and for 10 days after stopping the medication.
  • Natalizumab (e.g., Tysabri) – a medication given by infusion designed to block the movement of potentially damaging immune cells from the bloodstream to the brain and spinal cord. It may be used as a first-line treatment for some people with severe MS or as a second line treatment in others.
  • Alemtuzumab (e.g., Campath, Lemtrada) – a medication given by infusion that helps reduce relapses of MS by targeting a protein on the surface of immune cells and depleting white blood cells. This can limit potential nerve damage caused by the white blood cells, but also increases the risk of infections and autoimmune disorders, including a high risk of thyroid autoimmune diseases and rare immune mediated kidney disease. Treatment involves 5 consecutive days of drug infusions followed by another 3 days of infusions a year later. People treated with the drug must be registered in a special drug safety monitoring program.
  • Mitoxantrone — an immunosuppressant drug that can be harmful to the heart and is associated with development of blood cancers. As a result, its use in treating MS is extremely limited and it is only rarely used to treat severe, advanced MS.

Medical treatments for specific MS symptoms include:

  • Physical therapy — stretching and strengthening exercises as well as use of a mobility aid can help manage leg weakness and other gait problems often associated with MS.
  • Muscle relaxants – for example, baclofen (Lioresal) and tizanidine (Zanaflex), are used to help with painful or uncontrollable muscle stiffness or spasms, particularly in the legs.
  • Medications to reduce fatigue — such as Amantadine (Gocovri, Oxmolex), modafinil (Provigil) and methylphenidate (Ritalin).
  • Depression drugs – such as selective serotonin reuptake inhibitors.
  • Medication to increase walking speed – such as Dalfampridine (Ampyra). People with a history of seizures or kidney dysfunction should not take this medication.
  • Other medications — for depression, pain, sexual dysfunction, insomnia, and bladder or bowel control problems that are associated with MS.

Clinical Trials in MS:

Clinical trials are helping medical researchers better understand, diagnose and treat MS in the future. Learn more.

Sources: 1. WebMD Tips for Living With MS 2. Multiple Sclerosis Foundation


Management:

To help relieve the symptoms of MS, experts suggest to:

  • Get plenty of sleep. Make sure you’re getting the best possible sleep and manage any sleep disorders such as obstructive sleep apnea.
  • Exercise. Regular exercise can help improve strength, muscle tone, balance and coordination. Swimming or other water exercises may be good options to avoid heat. Other suggestions include walking, stretching, low-impact aerobics, stationary bicycling, yoga and tai chi.
  • Stay cool. In some people with MS, symptoms may worsen when body temperature rises. Therefore, try to avoid exposure to heat and use cooling scarves or vests.
  • Eat healthy. Be sure to eat a variety of healthy foods Also, some research suggests that vitamin D may help with symptoms of MS.
  • Reduce stress. Stress may trigger or worsen MS signs and symptoms. Yoga, tai chi, massage, meditation or deep breathing may help.

Sources: 1. WebMD Tips for Living With MS 2. Multiple Sclerosis Foundation


Resources

MS can have a significant impact on your ability to work, attend school and engage in social activities. Here are some helpful resources to help you learn more about ways to manage, and cope with, MS.

  • Multiple Sclerosis: Hope Through Research – Information about MS compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
  • Assistive Technology Program - The Multiple Sclerosis Association, a U.S.-based non-profit organization, provides assistance with finding assisted living devices for people living with MS.
  • My MS Manager - is a free app that lets you track MS activity, store medical information and also generate reports based on metrics including mood, symptoms, treatments and more. It includes links to additional resources and the ability to securely connect with members of your care team.
  • MS Support Groups – Through the Independent Support Group Network, the Multiple Sclerosis Foundation (MS Focus) provides guidance, resources, and structure while allowing affiliated support groups to maintain their independence.
  • BeCare MS App – A free app for tracking symptoms and managing the disease, available for both IOS and Android phones or devices.

Clinical Trials

Clinical trials are investigating potential treatments for people with MS. They are often seeking volunteers to take part.

If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation.

Have you considered taking part in a clinical trial for people with MS?

Potential benefits of participating in a clinical trial include:

  • Close care and monitoring by a study doctor and staff throughout the study
  • No cost for study treatment, related tests and procedures
  • Contribute to our understanding of the treatment options for MS in the future

If you would like to be considered for an upcoming clinical trial for people with MS, take our survey.

Please take some time to answer a few questions and be considered for an upcoming clinical trial for people with MS. We also invite you to join our MS Team community to connect with others affected by the disease.

Take Survey

Thank you for sharing with us.

If you would like to be notified about an upcoming clinical trial, you may sign up at the end of our survey.