When a friend asked Kimberly Zolotar what it was like having Multiple Sclerosis (MS), she couldn't immediately answer.
Sharing her thoughts in the "My Turn" section of the Los Angeles Times, Kimberly wrote in 2008, "How could I possibly explain how it feels to have a potentially disabling, progressive and incurable neurological disease? It has been 13 years since my doctor told me I have MS, but the answer to my friend's question changes every day, sometimes every hour."
She continues in her story - MS: It's a box of chocolate you don't want to share - "My MS experience reminds me of that famous line from the movie "Forrest Gump": 'Life is like a box of chocolates. You never know what you're gonna get.'"
What is MS?
Multiple sclerosis is a disease of the central nervous system, which is made up of the brain, spinal cord and optic nerves. Because MS affects the central nervous system, it's known as a neurological disease.
MS is an autoimmune disease that causes a person's usually protective immune system to turn on the body and attack healthy tissue.
In MS, the immune system attacks myelin, the protective layer that surrounds nerve fibers:
- Myelin is like the insulation around an electrical wire
- The disease destroys the myelin which results in the nerves not functioning properly
- Without the myelin, nerve signals aren't transmitted correctly
- The destroyed myelin is replaced with scars
- Without the myelin, nerves can be permanently severed and no longer function
- Damage can occur in multiple places within the nervous system - thus the name multiple sclerosis
Who gets MS?
According to the National MS Society, an estimated 400,000 Americans are living with multiple sclerosis.
- MS is most commonly first diagnosed in people aged 20-40
- Also diagnosed in people as young as 2 and as old as 75
- More women than men have it
- 2.1 million people worldwide have MS
- People with a family history of the disease are at greater risk
- Seen in all races, but most common in Caucasians, particularly of North European heritage
What are the symptoms of MS?
"Having MS means I might wake up to a numb hand, an aching back or legs saddled by weakness, stiffness or fatigue. Mornings can start out with a big yawn because I was up four times the night before to use the bathroom; my stomach and ribs might ache because it feels as if a boa constrictor has been squeezing them." describes Kimberly.
Common symptoms of MS can range from mild to severe and include:
Fatigue
- One of the most common MS symptoms
- 80 percent of people living with MS are troubled by fatigue
- Can be worse in the late afternoon
- Usually worsens as the disease progresses
Muscle problems
- Twitching or spasms
- Numbness or unusual sensation in any area
- Trouble moving arms or legs
- Problems walking
- Coordination problems, difficulty making small movements
- Tremor in arms or legs
- Weakness in arms or legs
Bladder and bowel problems
- Difficulty starting to urinate
- Strong or frequent urge to urinate (overactive bladder)
- Urine leakage (incontinence)
- Constipation and stool leakage
Vision and eye problems
- Double vision
- Eye discomfort
- Uncontrollable rapid eye movements
- Vision loss (usually affects one eye at a time)
Numbness, tingling, or pain
- Pain in the face
- Muscle spasms that are painful
- Tingling, crawling, or burning sensations in the arms and legs
Cognitive problems
- Trouble focusing and paying attention
- Memory lapses or loss
- Difficulty reasoning, making decisions and solving problems
Other brain and nerve symptoms
- Dizziness and balance problems
- Depression or feelings of sadness
- Hearing loss
Sexual difficulties
- Arousal problems
- Difficulty reaching orgasm
Speech and swallowing problems
- Slurred speech
- Problems with chewing and swallowing
MS is unpredictable
The problems it causes vary within each person living with the disease and from person to person. For some people, symptoms are silent for weeks, months or years and then come raging back.
For Kimberly, who lives with a serious form of the disease and relies on a walker, "Having MS means that I never know how I am going to feel when I wake up each morning. I have to plan around the whims of a body that no longer cooperates," she says. "The covering around the nerves of my brain and spinal cord is being slowly eaten away by my own cells, resulting in legs that no longer guide me effortlessly throughout the day."
What are the different types of MS?
Just like its symptoms, the disease shows itself differently in different people. There are four types of MS.
Relapsing-Remitting MS
- Most common form of the disease
- 85% of people are initially diagnosed with relapsing-remitting MS
- Clearly defined attacks feature worsening symptoms
- Attacks are called relapses, flare-ups or exacerbations
- These relapses are followed by partial or complete recovery periods (remissions)
- During remission, symptoms are evident and the disease doesn't progress
Primary-Progressive MS
- Rarer form of the disease - only about 10 percent of patients have this type
- Disease slowly gets worse over time
- No distinct relapses or remissions
- Progression may vary over time, with occasional plateaus and temporary minor improvements
Secondary-Progressive MS
- Disease changes from relapsing-remitting to a progressive form
- Disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus
- Before medications became available, approximately 50 percent of relapsing-remitting cases eventually progressed into this form
Progressive-Relapsing MS
- Rarest form of the disease - diagnosed in only 5 percent of cases
- Steadily worsening disease from the beginning
- Includes relapses that impair function
- There may or may not be some recovery after these relapses
- Disease continues to progress without remissions
What causes MS?
Scientists don't know the exact cause of MS. At this point, it's believed that MS is caused by a number of things.
If there's a family history of the disease, a person's risk increases. So there is thought to be some genetic link.
The disease is also more common in geographic areas that don't receive as much sunlight. One theory says that a lack of Vitamin D3 may be a culprit.
A virus may also be involved in causing the disease.
How is MS diagnosed?
Like the rest of the disease, MS can be tricky to diagnose. If you suspect you, a friend or a loved one may have MS, you need to see a doctor as soon as possible. The earlier it's diagnosed and treatment begins, the better the long-term outlook.
You will likely be referred to a neurologist, a physician who specializes in diagnosing and treating diseases of the central nervous system.
After a complete medical history is taken, several tests are generally used to diagnose MS, including:
- Neurological exam helps identify loss of nerve function
- An eye exam looks for vision changes and eye function problems
- MRI scans the brain and/or spine and often provide definitive diagnosis
- MRIs are used to track the course of the disease
- Nerve function studies are also used in diagnosing MS
How is MS treated?
In the last 20 years, a number of medications have been discovered to help relieve the symptoms of MS and slow the course of the disease. Common MS medicines include:
- Avonex
- Betaseron
- Copaxone
- Extavia
- Gilenya
- Novantrone
- Rebif
- Tysabri (in April, 2011, manufacturer, Biogen Idec, revealed severe health risks associated with this drug)
Serious MS attacks may require hospitalization and the use of IV medications (usually steroids) to treat.
Is there a cure for MS and is it fatal?
Unfortunately, there is currently no cure for multiple sclerosis. However a number of medications and technologies are available to slow the course of the disease, control symptoms and help patients maintain good quality of life.
MS is rarely fatal; however, in its most serious form, MS can lead to other health issues that can be.
A box of chocolate with all the good ones taken out
Kimberly doesn't like the box of chocolate that MS has given her. "Every chocolate I eat from the MS box is something I do not like, just like every MS symptom has the power to annoy me and sometimes even scare me," she says.
But MS doesn't rule everything in her life.
"Being diagnosed with MS when my adult life was just starting was a sad thing, but I am not a sad person," Kimberly wrote. "I am genuinely happy when I watch my little boy hit a baseball, when I have a "date night" with my husband or when a child I am working with begins reading. MS is powerful, but it cannot take these moments away from me."
