Understanding Multiple Sclerosis (MS)
Dive into our guide to MS. Everything from symptoms and treatments to stories of living with MS. Whether you're newly diagnosed, supporting someone who is, or seeking to deepen your understanding, this guide illuminates the path through the complexities of MS.
Introduction by Dr. Oliver Tobin
I’m Dr. Oliver Tobin, a neurologist specializing in multiple sclerosis at Mayo Clinic. In this video, we’ll be covering the basics of multiple sclerosis. What is it? Who gets it? The symptoms, diagnosis, and treatment. Whether you’re looking for answers about your own health or that of someone you love, we’re here to provide you with the best information available.
Defining MS
Multiple sclerosis is a disorder in which the body’s immune system attacks the protective covering of the nerve cells in the brain, optic nerve and spinal cord, called the myelin sheath. And this sheath is often compared to the insulation on an electrical wire. When that covering is damaged, it exposes the actual nerve fiber, which can slow or block the signals being transmitted within it. The nerve fibers themselves might also be damaged. The body can repair damage to the myelin sheath, but it’s not perfect. The resulting damage leaves lesions or scars, and this is where the name comes from: multiple sclerosis, multiple scars.
How MS Affects the Brain and Spinal Cord
Now everyone loses brain cells and spinal cord cells as they get older. But if part of the brain or spinal cord has been damaged by MS, the nerve cells in that area will die off faster than the areas around it that are normal. This happens very slowly, usually over decades and typically shows up as gradual walking difficulty happening over several years. When you read about multiple sclerosis, you may hear about different types — the most frequent being relapsing-remitting multiple sclerosis. And this is characterized by attacks, or relapses.
What Increases the Risk of MS?
We don’t know what causes MS, but there are certain factors that may increase the risk or trigger its onset. So while MS can occur at any age, it mostly makes its first appearance in people between the ages of 20 and 40. Low levels of vitamin D and low exposure to sunlight, which enables our body to make vitamin D, are associated with an increased risk of developing MS. As people who have MS who have low vitamin D tend to have more severe disease. So people who are overweight are more likely to develop MS and people who have MS and are overweight tend to have more severe disease and a faster onset of progression.
Geographic and Ethnic Influences
People who have MS and who smoke tend to have more relapses, worse progressive disease, and worse cognitive symptoms. Women are up to three times as likely as men to have relapsing-remitting MS.
The risk for MS in the general population is about 0.5%. If a parent or sibling has MS, your risk is about twice that or about 1%. Certain infections are also important. A variety of viruses have been linked to MS, including Epstein-Barr virus, which causes mono. Northern and southern latitudes have a higher prevalence, including Canada, the northern US, New Zealand, southeastern Australia, and Europe. White people, especially of northern European descent, are at the highest risk. People of Asian, African, and Native American ancestry have the lowest risk.
A slightly increased risk is seen if a patient already has autoimmune thyroid disease, pernicious anemia, psoriasis, type 1 diabetes, or inflammatory bowel disease.
Symptoms and Relapses
Symptoms of a relapse usually come on over 24 to 48 hours, last for a few days to a few weeks and then improve in the region of 80 to a 100 percent. Those symptoms include loss of vision in an eye, loss of power in an arm or leg or a rising sense of numbness in the legs. Other common symptoms associated with MS include spasms, fatigue, depression, incontinence issues, sexual dysfunction, and walking difficulties.
The Diagnosis Process
There’s currently no single test to make a diagnosis of MS. However, there are four key features which help to secure the diagnosis. Firstly, are there typical symptoms of multiple sclerosis? Again, those are loss of vision in an eye, loss of power in an arm or leg, or sensory disturbance in an arm or leg lasting for more than 24 hours.
Secondly, do you have any physical examination findings consistent with MS? Next, is the MRI of your brain or spine consistent with MS? Now here it’s important to note that 95 percent of people over the age of 40 have an abnormal brain MRI, just the same as many of us have wrinkles on our skin.
Lastly, are the results of the spinal fluid analysis consistent with MS? Your doctor may recommend blood tests to check for other diseases that share the same symptoms. They may also recommend an OCT test or optical coherence tomography. This is a short scan of the thickness of the layers at the back of your eye.
Managing Your Health with MS
So the best thing to do when living with MS is to find a trusted interdisciplinary medical team that can help you monitor and manage your health. Having a multidisciplinary team is essential for addressing the individual symptoms that you’re experiencing. If you have an MS attack or relapse, your doctor may prescribe you corticosteroids to reduce or improve your symptoms. And if your attack symptoms do not respond to steroids, another option is plasmapheresis or plasma exchange, which is a treatment similar to dialysis. About 50 percent of people who do not respond to steroids have a significant improvement with a short course of plasma exchange. There are over 20 medications currently approved for prevention of MS attacks and prevention of new MRI lesions.
Lifestyle, Support, and Mental Health
As learning to function with MS can be challenging, there are medical experts ready to work with you to help you manage it, so you can still live a full life. Consulting with a physiatrist, physical or occupational therapist can help you deal with physical difficulties. Physical activity is strongly recommended for all people with MS. Mental health is also an important consideration. So keeping up personal connections with friends and family and trying to stay involved with your hobbies is important. But also be kind to yourself and realistic about what you’re up for. This can change from day to day, so it’s okay to give yourself permission if something seems like too much or if you need to cancel plans.
You may also find support groups helpful to connect with people who understand what you are going through and discuss your feelings and concerns with a doctor or a counselor. Meanwhile, scientists are hard at work, expanding our understanding of this disease and developing new treatments and medications which are ever more effective. If you want to learn more, watch more of our videos or visit mayoclinic.org. We wish you well.
Introduction
What is MS?
Multiple Sclerosis (MS) is a chronic, autoimmune disease where the body's immune system attacks the central nervous system (CNS), comprising the brain, spinal cord, and optic nerves. This attack disrupts the flow of information within the brain and between the brain and body, leading to a range of neurological symptoms.
The Immune System's Role in MS
In MS, the immune system mistakenly targets the CNS, particularly the myelin sheath that insulates nerve fibers, causing inflammation and damage. This abnormal immune response leads to the disruption of neural signals, contributing to the symptoms of MS.
Impact of MS on the Central Nervous System
The damage inflicted by MS on the CNS results in scar tissue formation and demyelination, impeding the brain's ability to send and receive signals effectively. Over time, this can lead to a variety of physical, cognitive, and emotional symptoms, varying widely among individuals.
Is MS an Autoimmune Disease?
While MS is considered an immune-mediated disease due to the immune system's attack on the CNS, it falls within the broader category of autoimmune diseases. However, unlike many autoimmune diseases, the specific antigens triggering the immune response in MS have not been conclusively identified, making it a unique case within this disease category.
Types
What are the Different Types of MS?
Multiple Sclerosis (MS) manifests in several distinct types, each characterized by its pattern of symptom onset and progression. Understanding these types helps in tailoring treatment approaches and managing expectations regarding the disease's course.
Clinically Isolated Syndrome (CIS)
is a single, first episode of neurological symptoms lasting at least 24 hours, indicative of inflammation or demyelination in the CNS, potentially a precursor to MS.
Relapsing-Remitting MS (RRMS)
is the most common form of MS, marked by clear episodes of exacerbations or relapses followed by periods of partial or full recovery (remissions).
Primary Progressive MS (PPMS)
features a gradual onset and steady progression of symptoms without early relapses or remissions.
Secondary Progressive MS (SPMS)
follows an initial relapsing-remitting course, transitioning into a phase where the disease progresses more steadily, with or without occasional relapses, remissions, or plateaus.
Symptoms
What are the Symptoms of MS?
The symptoms of Multiple Sclerosis vary widely among individuals and can change over the course of the disease, affecting the brain, spinal cord, and optic nerves. Here, we explore both the common and lesser-known symptoms, providing insights into how this condition impacts daily life.
Common Symptoms of MS
Fatigue
Often described as one of the most debilitating symptoms, fatigue in MS can significantly interfere with daily activities, not necessarily related to physical exertion.
Numbness or Tingling
Frequently occurring in the face, arms, legs, or fingers, this symptom can be the first sign of multiple sclerosis for many people.
Walking Difficulties
Coordination and balance issues, coupled with muscle weakness, can make walking and mobility challenging.
Muscle Spasticity or Stiffness
Involves a sudden muscle tightness or spasms, predominantly in the legs.
Weakness
Muscle weakness, often in the limbs, can result from a lack of nerve stimulation or damage to nerve fibers.
Vision Problems
Including blurred vision, double vision, or loss of vision, usually affecting one eye at a time due to optic neuritis.
Bladder and Bowel Problems
Including increased frequency or urgency in urination, hesitancy in starting urination, or bowel incontinence.
Pain
Can be directly related to MS or a consequence of walking difficulties and spasticity, affecting various body parts.
Cognitive Changes
Such as difficulties with memory, concentration, and performing sequential tasks.
Emotional Changes
Including mood swings, depression, or euphoria.
Lesser-Known Symptoms of MS
Speech Problems
Difficulty in articulating words, known as dysarthria, can affect communication. Symptoms might include slurred or nasal-sounding speech.
Swallowing Problems
Known as dysphagia, this can lead to coughing or choking while eating or drinking. Swallowing difficulties may require dietary adjustments or treatment from a speech therapist.
Hearing Loss
A rare symptom that can occur when MS lesions affect the auditory nerves. Although not common, some individuals may experience sudden hearing loss.
Seizures
Occur in a small percentage of people with MS, due to lesions in the brain. Seizures in MS patients are typically managed with medication.
Breathing Problems
Can happen in advanced MS due to muscle weakness affecting the respiratory muscles. Respiratory issues might require the use of ventilatory assistance in severe cases.
Itching
Uncontrollable itching sensations that are not caused by irritants or allergic reactions. Itching in MS is a neurological symptom and can be managed with medication.
Headaches
Although not exclusively related to MS, some studies suggest a higher prevalence of certain types of headaches in MS patients. Management typically involves standard headache treatments, but addressing MS-specific factors can also be necessary.
Diagnosis
How is MS Diagnosed?
Diagnosing Multiple Sclerosis involves a combination of patient history, clinical evaluation, and several diagnostic tests to rule out other conditions with similar symptoms. Because there's no single test that can definitively diagnose MS, healthcare professionals use a variety of strategies to identify the disease accurately.
Magnetic Resonance Imaging (MRI)
MRI is a critical tool in the MS diagnosis process, offering detailed images of the brain and spinal cord. It can reveal lesions or areas of damage (demyelination) that are hallmarks of MS. The presence of these lesions, especially if they appear in different areas of the central nervous system at different times, strongly suggests MS.
Clinical Evaluation and Patient History
A neurologist will begin with a detailed medical history and physical examination, focusing on neurological signs that might indicate MS. This initial evaluation seeks to identify patterns of symptoms consistent with the disease's known characteristics.
Lumbar Puncture (Spinal Tap)
In some cases, a lumbar puncture may be performed to collect and analyze cerebrospinal fluid (CSF) that surrounds the brain and spinal cord. This test can reveal abnormalities in antibodies that are associated with MS.
Evoked Potentials
Evoked potential tests measure electrical activity in the brain in response to stimuli (visual, auditory, or sensory). These tests can help identify abnormalities in the brain's pathways that are not evident in a clinical examination.
Blood Tests
While no blood test can diagnose multiple sclerosis, blood tests can help rule out other conditions with symptoms similar to MS, such as Lyme disease, certain autoimmune diseases, and vitamin and mineral deficiencies.
Challenges in Diagnosis
Diagnosing MS can be challenging, particularly in its early stages or in cases with atypical symptoms. The criteria for diagnosing MS, known as the McDonald Criteria, have been revised several times to improve accuracy and allow for earlier diagnosis, which is crucial for effective treatment.
Treatment
What Treatments are Available for MS?
The treatment of Multiple Sclerosis (MS) has evolved significantly, with options now available that can modify the disease course, manage symptoms, and improve quality of life. While there is currently no cure for MS, treatments aim to reduce relapses, slow progression, and alleviate the impact of symptoms.
Disease-Modifying Therapies (DMTs)
DMTs are the cornerstone of MS treatment, focusing on reducing the frequency and severity of relapses, slowing the progression of the disease, and preventing new disease activity as seen on MRI scans. There are several types of DMTs available, including injectables, oral medications, and infusions. The choice of DMT depends on the type of MS, the disease's activity level, and the patient's overall health and preferences.
Managing Relapses
Treatment for MS relapses typically involves high-dose corticosteroids, which can reduce inflammation and shorten the duration of relapses. These are usually administered intravenously but can also be given orally in some cases.
Symptom Management
A multidisciplinary approach is often necessary to address the wide range of symptoms MS can cause, including fatigue, mobility issues, pain, and cognitive challenges. Treatments may involve physical therapy, occupational therapy, medication for specific symptoms (such as muscle relaxants for spasticity or medication for neuropathic pain), and lifestyle modifications.
Rehabilitation
Rehabilitation programs tailored to the individual's needs can help maintain or improve function and mobility, manage fatigue, and adapt to changes in ability. These programs often include physical and occupational therapy, speech therapy, and cognitive rehabilitation.
Emerging Therapies and Research
Ongoing research into MS continues to bring new treatments to the forefront, including therapies targeting the underlying mechanisms of multiple sclerosis, stem cell treatments, and lifestyle interventions with potential to affect disease progression. Participation in clinical trials may also be an option for accessing the latest treatments.
Lifestyle and Complementary Approaches
Lifestyle changes, such as diet modifications, exercise, and stress management, can complement medical treatments to help manage MS symptoms and improve overall well-being. Some individuals also explore complementary therapies, such as acupuncture or yoga, although these should be discussed with a healthcare provider to ensure they're safe and effective.
Who Develops Multiple Sclerosis?
Nearly 1 million people in America are living with MS and 2.8 million worldwide. That's 1 in every 350 people in the US.
MS can affect individuals of any age, background, or gender, but certain patterns have emerged that highlight its prevalence in specific demographic groups. Research shows that environmental, genetic, and possibly lifestyle factors contribute to the risk of developing MS.
Demographic Patterns in MS Diagnosis
MS is most commonly diagnosed in individuals between the ages of 20 and 50, although it can also occur in children and older adults. While the disease affects people worldwide, higher rates of multiple sclerosis are found farther from the equator, indicating geographic and environmental influences on its occurrence.
Gender and MS: Understanding the Disparity
Women are diagnosed with MS at nearly three times the rate of men, a significant gender disparity that suggests hormonal and genetic factors may play a role in the disease's development. This difference underscores the need for gender-specific research and treatment approaches in managing multiple sclerosis.
What is the Prognosis for People with MS?
The outlook for individuals with Multiple Sclerosis varies due to factors like disease type and stage of diagnosis. However, with today's disease-modifying therapies and comprehensive care strategies, many live well with MS, experiencing slowed disease progression and managed symptoms.
Early Treatment
Initiating treatment soon after diagnosis can significantly improve long-term outcomes, especially for those with Relapsing-Remitting MS (RRMS).
Lifestyle Adjustments
Engaging in a healthy lifestyle, including exercise and diet, supports overall well-being and may positively influence MS management.
Living with MS
Many individuals find ways to adapt and maintain quality of life through various support systems, lifestyle adjustments, and rehabilitation services. Physical therapy and occupational therapy can help individuals manage symptoms and retain mobility.
Ongoing Research
Advances in MS research continue to offer new hope, improving treatment options and understanding of the disease.
Causes
What Causes Multiple Sclerosis?
The exact cause of Multiple Sclerosis remains unclear, but it's understood to be a complex interplay of genetic predisposition and environmental factors that trigger an abnormal immune response against the central nervous system.
Genetic Factors
While MS is not directly inherited, having a family member with multiple sclerosis increases one's risk, indicating a genetic susceptibility to the disease.
Environmental Factors
Various environmental elements, including vitamin D deficiency, smoking, and viral infections (notably the Epstein-Barr virus), have been linked to an increased risk of developing MS.
Immunological Factors
MS involves an immune-mediated process where the body's immune system mistakenly attacks myelin, the protective sheath covering nerve fibers in the central nervous system, although the specific antigens initiating this response are not yet identified.
Living with MS
Inspiration and Insight: Our Alumni Living with MS
Understanding MS through statistics and medical explanations is vital, but hearing about the real-life experiences of those who live with the condition every day adds a deeply personal and inspiring layer to the narrative. Below, we share stories from our alumni who are navigating life with multiple sclerosis, offering a glimpse into their challenges, triumphs, and valuable lessons learned.
MS Diagnosis Stories: Redefining Life at 23 – Lina Garada’s Journey
At the age of 23, when life's script is supposed to be about exploration, adventure, and the dawn of adulthood, Bike the US for MS alumni, Lina Garada, faced a ...
Nikki’s Journey: Cycling with MS on the Olympic Peninsula Loop
In the heart of the Pacific Northwest, the Olympic Peninsula Loop presents a formidable challenge for cyclists, especially those cycling with MS. For Nikki, a ...
MS Community Support
How do we support those living with MS?
Together, we have the opportunity to make a major impact on someone’s life by:
Raising Awareness
in every big city or small town we bike through by sharing stories about MS.
Funding Programs
that are dedicated to helping those with MS on a daily basis.
Performing Service Projects
for someone with MS who needs our helping hands around the house.
Providing Direct Assistance
by installing ramps to help maintain independence or providing Bioness devices to aid with mobility.
FAQ
Frequently Asked Questions about MS
Here are answers to some of the most common questions about Multiple Sclerosis to help you understand more about the disease.
Can Multiple Sclerosis be cured?
Currently, there is no cure for MS. However, treatments are available that can significantly reduce the disease’s activity, manage symptoms, and improve quality of life for many people living with MS.
How is MS diagnosed?
MS is diagnosed through a combination of patient history, neurological exams, magnetic resonance imaging (MRI), and sometimes a lumbar puncture (spinal tap) or evoked potentials tests to check for damage in the central nervous system.
What treatment options are available for MS?
Treatment options include disease-modifying therapies (DMTs) to reduce disease activity and manage relapses, symptom management medications, physical and occupational therapy, and lifestyle modifications.
Is MS contagious?
No, multiple sclerosis is not contagious. It cannot be transmitted from person to person.
What are the early signs of MS?
Early signs of MS can include visual disturbances, numbness or weakness in one or more limbs, tingling sensations, balance and coordination problems, and fatigue.
Can lifestyle changes affect MS?
While lifestyle changes cannot cure MS, healthy habits such as a balanced diet, regular exercise, quitting smoking, and managing stress can help manage symptoms and potentially improve the overall quality of life for those with MS.
For your convenience, we provide a cubby box per rider to transport your gear from camp to camp in the trailer of our support van. Additionally, a smaller day box for essential items will be accessible at rest stops during the ride.
Regarding your bike and biking equipment, it’s important to be comfortable on your bike and have trained on it. However, we’re here to help if you need advice on bike rentals or any other equipment. Once registered, we’ll provide a comprehensive gear list detailing everything you’ll need for a successful and enjoyable ride.
Is MS hereditary?
Multiple sclerosis is not directly inherited, but having a close family member with MS can increase your risk, suggesting a genetic predisposition to the disease.
How does MS affect daily life?
The impact of multiple sclerosis on daily life varies widely among individuals and can include challenges with mobility, fatigue, pain, and cognitive functions. Many people with MS lead active and fulfilling lives with the help of treatment and adaptive strategies.
What research is being done on MS?
Ongoing research on MS spans understanding its causes, developing new treatments to slow disease progression, managing symptoms more effectively, and ultimately finding a cure.
Where can I find support and resources for living with Multiple Sclerosis?
Support and resources are available through national MS societies, local support groups, online forums, and healthcare providers specializing in MS care.