Two common misconceptions about multiple sclerosis (MS) are that the disease of the central nervous system affects everyone the same way; and that being diagnosed with the condition guarantees debilitating disability. In reality, there are four different types of MS that range in severity; and many sufferers, no matter which type they have, can live their lives as they have always planned.
Let’s take a closer look at the types of MS, and how each may affect your body and your life.
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What is multiple sclerosis (MS)?
“Multiple sclerosis is a disease that is caused by abnormal immune system activity that results in injury to the brain and spinal cord,” says Andrew D. Smith III, M.D., assistant professor at the Geisel School of Medicine at Dartmouth College and a neurologist specializing in MS with the Multiple Sclerosis Center of the department of neurology at Dartmouth Health in Hanover, New Hampshire. Specifically, as the Mayo Clinic explains, MS occurs when your immune system attacks the myelin, which is the sheath that protects your nerve fibers. This causes a communication short-circuit between your brain and your body, and can affect how you move and function. “The average age of diagnosis of MS is around 30,” says Dr. Smith, “and it is three times more likely to occur in women.”
Symptoms of MS can vary widely, but include:
- Numbness in limbs
- Tingling sensations
- Tremors, or unsteadiness when walking
- Eye problems like loss of vision, blurry vision, or double vision
- Slurred speech
Although the precise cause of multiple sclerosis is unknown, a recent Harvard University study found a strong link between being infected with the Epstein-Barr virus and developing MS. Some studies link MS to hormones which, it’s believed, is why the disease is more prevalent in women.
The 4 types of multiple sclerosis (MS):
Clinically Isolated Syndrome (CIS)
CIS is a single event of neurological/central nervous system symptoms that may or may not mean the patient will go on to full-blown MS. “Because it’s only one episode, it does not meet the criteria for multiple sclerosis,” says Julie Fiol, MSW, BSN, RN, MSCN, associate vice president of healthcare access for the National MS Society. However, CIS is the first potential sign of MS.
Symptoms of CIS occur in two ways:
- A monofocal presentation means that you experience just one neurological symptom, such as blurry or dim vision.
- A multifocal presentation means you experience multiple symptoms during an episode, like blurry vision accompanied by numbness in your arm or leg.
If an MRI shows no visible brain lesions, there is only about a 20% chance of CIS developing into full-blown MS. If brain lesions are detected, the odds jump to 60-80%. To try to stop further progression, patients who experience CIS will often be prescribed a disease-modifying course of therapy.
Relapsing/Remitting MS (RRMS)
RRMS sufferers have clearly defined symptoms of MS that occur repeatedly. The symptoms come back for at least 24 hours, progress, then go away. About 85% of MS patients present with this type. “These patients are at risk for having more relapses of new or worsening neurological symptoms,” says Smith. “Relapses typically last days to weeks to months with some improvement, but symptoms of disability may never resolve.”
RRMS is not a progressive form of MS. It’s characterized, by whether your symptoms are active, not active, worsening or not worsening. Every patient with RRMS will have a unique presentation, so it’s important to work with your doctor regarding your specific treatment and prognosis.
Secondary Progressive MS (SPMS)
SPMS can occur both with active attacks of symptoms or asymptomatically some of the time. However, tests will show a worsening of neurological function as time passes. Attacks that are symptomatic may be very brief. For example, you may have fleeting periods of fatigue, tingling in your arms or legs that last just a short time, or a quick episode of blurry vision. You may also have trouble walking for varying lengths of time. As SPMS continues to affect your body, you have a good chance of being able to continue walking–two-thirds of patients can–but you may need the aid of a cane or walker.
The earlier diagnosis and treatment occurs, the better the long-term outcome for SPMS patients can be. “We don’t want to use therapy to reverse disability,” explains Ben Thrower, M.D., senior medical advisor for the Multiple Sclerosis Foundation and medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta, Georgia, “we use it to prevent disability–we don’t want to wait.”
Primary Progressive MS (PPMS)
A diagnosis of PPMS means that you are experiencing ongoing symptoms that continue to worsen, slowly but steadily. You don’t have attacks of symptoms; you have a progressive course of continuing issues with numbness, weakness, fatigue, and bowel or bladder problems. “This is the disease course in which a person has a history of gradual worsening of neurological symptoms over at least one year,” says Smith.
About 10-15% of MS patients have PPMS from the onset of the disease. Patients are usually older when they’re diagnosed (ages 50 and up), and often initially have difficulty walking, as opposed to vision issues or tremors. Eventually, your ability to walk can be compromised.
Diagnosing multiple sclerosis (MS):
It can be very hard to diagnose MS, explains Thrower. On average, it takes three years from the start of symptoms for a patient to receive a diagnosis. “There’s no blood test to diagnose MS. We use MRIs of the brain as a diagnostic tool. Part of the challenge is that MS symptoms tend to be very non-specific. For example, fatigue is the number one complaint MS patients will bring to a PCP’s attention, but fatigue can indicate so many different conditions.”
Sometimes, an MRI doesn’t point to anything specific enough. “When your test results are inconclusive, that could mean you have only had CIS and you need to have another episode before it can be considered multiple sclerosis,” explains Fiol. “It could also mean that your symptoms sound like MS, but there is no evidence of demyelination on your MRI.”
What can really help your doctor is good note-taking on your part. “Keep track of any symptoms using a diary or app,” says Fiol. “Keep up with your medical appointments and get MRIs. This time of uncertainty can be quite anxiety-provoking–you’re essentially being told to wait for the other shoe to drop. Try not to let fear take over and paralyze you; keep living your life.”
Multiple sclerosis (MS) treatment:
“The landscape of our treatment options for MS has dramatically improved over the course of the past 1-2 decades,” says Smith. “We currently have 24 FDA-approved MS treatments with therapies. We also continue to improve our ability to assist people with MS with symptoms and disability, and there are large amounts of ongoing research that have resulted in significant progress in our understanding of MS. This is likely to result in improved care.”
The bottom line:
If you are diagnosed with any type of MS, stay informed and proactive. “It’s very possible to make MS as small a part of your life as you want with the right treatment for you,” Fiol says. “Ensure the healthcare team you work with knows what is important to you. Focus your treatment on helping you stay on track with your life goals.” As Thrower sums it up: “No matter what type of MS you have, it does not define you as a person.”
Lisa Mulcahy is an internationally established health writer whose credits include Good Housekeeping, Prevention, Oprah Daily, Woman’s Day, Elle, Cosmopolitan, Glamour, Parade, Health, Self, Family Circle and Seventeen. She is the author of eight best-selling books, including \The Essentials of Theater.\
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