Multiple sclerosis (MS) is a complex and unpredictable condition. Scientists and researchers are discovering more and more about the hows and whys of MS — but with many unknowns remaining, there are still many myths and misconceptions about MS.
Myth #1: If You Have MS, You Will Become Disabled
MS presents uniquely for each person with the disease. While disease progression and symptoms vary widely from person to person, most people with MS do not become disabled.
The Expanded Disability Scale (EDSS) is a system used to quantify MS-related disability. The EDSS is a zero-to-ten point scale, measured in half-point increments based on a person’s ability to walk. The higher the EDSS score, the greater the challenges a person experiences walking.
Scores above five points indicate a person experiences difficulty walking and disability enough to impair daily function. In a study of people with MS conducted in Ontario, CA, more than half of the participants had a score below five. Nearly 90 percent reported an EDSS score of seven (which indicates wheelchair use) or lower.
The severity, size, and location of MS lesions that develop in a person’s central nervous system (CNS) determine which functions, including motor functions and mobility, are limited and how debilitatingly — in other words, whether or not a person becomes physically disabled.
In people with MS, lesions usually appear in the brain stem, cerebellum, spinal cord, and cranial nerves. Lesions can appear in one specific area of the brain, in multiple areas, or in large swathes of the central nervous system.
Myth #2 MS Is Fatal
While MS is a chronic condition that currently has no known cure, MS is not typically a fatal disease. In most cases, MS is a manageable and treatable condition, especially if it’s diagnosed early, treated appropriately (even aggressively), and regularly monitored to track and manage disease progression.
MS is a degenerative autoimmune disease, meaning the probability of severe impairment increases the longer a person has lived with MS. However, MS is not the cause of death in the majority of people who pass away and have an MS diagnosis. Most people with MS have a life expectancy around six years to seven years shorter than the general population.
There is an exception, however, for one form of MS: malignant multiple sclerosis. This is the rarest form of MS. Malignant MS, unlike the other types of MS, is characterized by rapid progression to disability and death. Malignant MS comes with a significantly shorter life expectancy than the general population.
Myth #3: Cognitive Problems Only Occur in the Advanced Stages of MS
The cognitive impact of MS can occur at any point in a person’s MS progression.
Cognitive symptoms do not align with the severity of a person’s physical symptoms or how long a person has been living with MS. A person may experience few or mild physical MS symptoms but still have significant cognitive symptoms. Another person with debilitating physical symptoms may exhibit almost no cognitive symptoms.
Cognitive symptoms are those affecting memory and the ability to comprehend or process information. These symptoms include:
- Memory loss
- Decreased abstract reasoning ability
- Decreased ability for judgment or decision making
- Lower information processing speeds
- Decreased attention or concentration
Between 5 and 10 percent of people with MS develop a severe type of dementia. This MS-related dementia is similar to Alzheimer disease and is severe enough that it often leaves a person incapable of independent management of their day-to-day lives.
People whose cognitive symptoms are milder respond well to an integrated treatment approach and to cognitive rehabilitation.
Myth #4: MS and Amyotrophic Lateral Sclerosis (ALS) Are Basically the Same Illness
ALS and MS are both degenerative neurological diseases, but when comparing ALS vs. MS — the causes, general progression, effective treatments, and prognoses — ALS and MS are two distinct diseases.
There can be a lot of symptom overlap between MS and ALS. Both ALS and MS can affect balance and mobility. Difficulty walking, weakness, muscle spasms, trouble gripping objects, frequent tripping, and difficulties chewing and swallowing can all be experienced by people with ALS or with MS.
However, the diseases and symptoms occur by two completely different processes. ALS causes motor neuron degeneration and MS causes inflammation. ALS progresses continuously from the onset. Most types of MS, however, present in a pattern of relapse and remission, or symptom-free periods between relapses.
To accurately determine whether a person has ALS or MS, neurological testing by a specialized provider is needed. It is extremely rare for a person to have both MS and ALS.