Living With Multiple Sclerosis
Education and awareness around multiple sclerosis and how UT Health Austin experts help patients manage symptoms to ensure the best quality of life
Reviewed by: Ethan Meltzer, MD
Written by: Lauryn Gerard and Abbi Havens
Multiple sclerosis, more commonly known as MS, is an unpredictable disease. The hallmark of MS is the heterogeneity of the disease progression in which people diagnosed with MS can experience a range of symptoms and differ greatly in responsiveness to treatment. To the outside observer, the wide array of characteristics observed in people with MS as well as the unpredictability of the disease course cause MS to appear as more of a spectrum of diseases rather than a single disease. So what exactly is multiple sclerosis?
What is multiple sclerosis?
MS is a disease in which the body’s immune system has an abnormal response to the central nervous system and causes inflammation and damage to myelin, a fatty material that protects your nerves. Think of myelin as akin to the rubber insulation that protects electrical wires. When that insulation is damaged, the wires are unable to conduct electrical signals with the same speed and fidelity as when they were insulated. Admittedly, this is a simplified view of the pathophysiology of MS as the damage that occurs is not limited just to the myelin but impacts the underlying neurons themselves.
In addition to inflammation, there is also neurodegeneration. Multiple sclerosis means “many scars,” which alludes to the widespread, and seemingly random involvement, of various parts of the brain and spinal cord. The variability between people with MS in the burden and location of lesions within the brain and spinal cord causes the diversity in manifestation of symptoms.
We can divide MS into different phases. Approximately 85% of people diagnosed with the disease are diagnosed with relapsing-remitting MS. Individuals with relapsing-remitting MS tend to develop symptoms between their 20s and 40s and experience attacks of symptoms (relapses) and periods of recovery (remissions), which can last days, months, or years. Most individuals diagnosed with relapsing-remitting MS will eventually develop a more progressive decline in neurologic function and fewer relapses, which is referred to as secondary progressive MS. Approximately 10% of people diagnosed with MS are diagnosed with primary progressive MS, which involves symptoms that gradually become worse over time. This form of MS is more difficult to manage with treatment. Primary progressive MS typically emerges in individuals around the age of 40 and can lead to disability at an earlier stage of life.
What is it like to live with multiple sclerosis?
MS is a life-long condition, and people living with MS are often forced to adapt to a new lifestyle. While living with MS can be difficult, not every individual diagnosed with MS is affected by the condition in the same way. For some individuals, symptoms can evolve or worsen over time, affecting many aspects of their daily life, such as their health, wellness, relationships, and career. Other individuals may experience long periods of time before their symptoms return to a more severe state. MS is often thought of as an inevitably disabling disease; however, most people diagnosed with MS can enjoy a good quality of life, especially when provided with the appropriate support. MS is rarely fatal, and people diagnosed with MS can expect to live the same lifespan as a person without MS.
Commonly reported symptoms of MS include:
- Vision problems. Problems with vision are often the first sign of MS. Damage to the optic nerves can result in blurred vision, poor color contrast, or pain with eye movement.
- Fatigue. 80% of people with MS experience fatigue. This symptom includes physical and mental fatigue from performing simple tasks. Lassitude, or “MS fatigue,” is specific to those experiencing MS and more severe than what we generally regard as fatigue.
- Loss of motor control. Muscle spasms, involuntary movement, muscle stiffness, and difficulty walking are common results of damage in the nerves, brain, and spinal cord.
- Cognitive dysfunction. This is sometimes referred to as “cognitive fog” and frequently is described as difficulty with multi-tasking or processing speed, which can lead to challenges at work or managing a household.
- Bladder and bowel dysfunction. Damage to relevant nerves may affect nerve signals to and from the muscles that control the bladder, bowel, and urinary muscles, resulting in incontinence and frequent urination.
- Heat sensitivity. Heat makes transmitting electrical signals more difficult, if not impossible, for already damaged and demyelinated nerves. As a result, people diagnosed with MS often experience worsening of symptoms when they have a fever, are overheated from exercise, or find themselves outside in a warm climate.
- General pain. People with MS often feel a general stinging, burning, and/or tingling pain throughout the body as a result of nerve damage. Other chronic pains may result from issues with walking and muscle spasms.
Although less common, many people with MS also experience:
- Hearing loss. Although rare, hearing loss has been reported as the first sign of MS. Roughly 6% of people with MS experience hearing loss.
- Speech problems. 25-40% of people diagnosed with MS experience slurred speech, the inability to raise one’s voice, and difficulty with articulation of words. Speech problems usually arise further along in the disease’s progression.
- Difficulty swallowing. Difficulty swallowing (dysphagia) occurs when nerves controlling the muscles in the mouth and throat have become damaged.
- Seizures. Seizures are the result of abnormal electrical discharges in injured areas of the brain.
- Tremors. Tremors, not to be confused with seizures, are involuntary, rhythmic muscle contractions that lead to uncontrollable shaking and can occur in various parts of the body or across the whole body as a result of damage along nerve pathways that coordinate movement.
An individual diagnosed with MS may experience all, a combination of, or none of these symptoms. People diagnosed with MS may also experience symptoms not included in this listing.
Managing Multiple Sclerosis
Although there is currently no cure for MS, there are many treatment options available to patients to help manage their symptoms so that they can live life to the fullest. Treatment of MS is centered on both medications that prevent or slow neurologic disability by decreasing inflammation and medications or other therapies that target symptoms that are the result of prior damage. New, state-of-the-art medications that are highly effective at preventing MS inflammatory attacks are now available. Over the past several decades, a revolution in MS treatment has occurred, causing the approach to MS treatment to look remarkably different to even today’s prior generation. People with MS now have access to over 20 different treatment options aimed at targeting the underlying mechanisms of disease.
Holistic MS care is about preventing future disability and allowing people with MS to maximize current function. Thus, management of symptoms that have already developed due to prior relapses and disease progression is tantamount to improving quality of life of people with MS. At UT Health Austin, this is accomplished through a multidisciplinary team of medical professionals, using both pharmaceutical and non-pharmaceutical interventions. A board-certified neurologist specializing in MS acts as the quarterback of the patient’s team, which is comprised of a variety of specialists that may include physical therapists, occupational therapists, physiatrists, speech pathologists, mental health professionals, urologists, obstetricians and gynecologists, and more. This team helps manage any number of MS-related symptoms that may have a profound impact on the quality of life of a person living with MS. Whether it be fatigue, bladder symptoms, or muscle tightness, these specialists work directly with the patient to find the therapeutic options that work best for the patient.
Living with Multiple sclerosis is not easy. But through the support of a devoted team of care professionals as well as continuing to carry out healthy practices, managing your symptoms, and addressing your mental health needs, you and your loved ones can experience joy and live fulfilled lives regardless of your diagnosis.
If you or a loved one are experiencing symptoms of MS or are in need of a care team to help manage your MS, speak with your primary care physician about a referral to UT Health Austin’s Multiple Sclerosis and Neuroimmunology Center.
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