“The West Wing,” a 90s television drama about the presidency famously brought multiple sclerosis (MS) to the screen in a unique, realistic way that no other mainstream show had before.
Consider this scene in the season two premiere: The President is about to go into surgery, and the First Lady pulls the anesthesiologist aside. “Seven years ago my husband was diagnosed with a relapsing-remitting course of MS,” she discloses for the first time, launching MS as a central story arc of the show.
Though this particular scene is dramatic, the rest of the series depicts MS as a condition that progresses slowly and surely — but one that still allows for a healthy, active, fully functioning life.
In this article, we’re exploring the complex reality that MS is serious but often slowly progressing, incurable but treatable, complicated but navigable. First, we’ll review what MS is and how it affects your body. Then, we’ll consider strategies for coping and living well.
Understanding Multiple Sclerosis
What Is Multiple Sclerosis?
Multiple sclerosis is a disease that affects the brain, spinal cord, and optic nerves, which make up the central nervous system (CNS) and control everything we do, says the National Multiple Sclerosis Society. It’s often abbreviated as MS and usually gets diagnosed in adults between 20 and 40.
With MS, the immune system gets triggered to attack the central nervous system; specifically, it’s attacking the myelin layer surrounding and protecting the CNS’ nerve fibers, according to the Mayo Clinic’s MS information. This damage disrupts communication between the brain and the body. As a result, some diagnosed with MS may experience numbness, memory problems, pain, fatigue, or other symptoms.
The National MS Society notes that there are four different types of MS, called disease courses:
- Clinically Isolated Syndrome (CIS): CIS refers to the first episode of neurological symptoms caused by inflammation and/or CNS damage; the episode must last over 24 hours and could involve vision issues, vertigo, loss of sensation in the face, weakness in the arms and legs, difficulty functioning, or bladder problems. Not all people who have CIS will develop MS.
- Relapsing-Remitting MS (RRMS): Someone diagnosed with MS that’s relapsing-remitting experiences new or increasing symptoms (relapse) followed by periods of partial or complete recovery (remission). About 85% of people are initially diagnosed with RRMS.
- Secondary Progressive MS (SPMS): After the relapsing-remitting disease course, some people diagnosed with MS enter this secondary course; their functioning worsens, and their disability increases over time.
- Primary Progressive MS (PPMS): When someone is diagnosed with MS that’s primary-progressive, their functioning worsens as soon as symptoms appear; there are no relapses or remissions. Around 15% of people diagnosed with MS have PPMS.
Symptoms of MS
Everyone’s experience with this disease is different, and their own experience can change over time. There is no typical pattern of symptoms, says the MS Society’s article on early signs of MS. If you’ve searched online for symptoms, the long list may feel overwhelming; but know that everyone’s symptoms are different, and not all symptoms are experienced by each person.
Before an MS diagnosis, the individual usually notices a first symptom or set of symptoms, according to the National Institute of Neurological Disorders and Stroke. These early indicators often include vision problems, muscle weakness or stiffness, numbness, clumsiness, bladder control issues, and dizziness. However, remember that people experience MS differently; one patient’s “first symptom” may never be experienced by someone else diagnosed with MS.
Throughout the disease course, some of the more common symptoms of multiple sclerosis include:
- Fatigue
- Dysesthesia (the “MS hug,” a squeezing sensation around the torso)
- Walking difficulties
- Numbness and tingling
- Loss of balance and dizziness
- Stiffness or spasms
- Pain and itching
- Bladder issues
- Bowel problems (e.g., constipation, incontinence)
- Vision problems (e.g. blurred or double vision, or optic neuritis, which causes pain or rapid vision loss)
- Cognitive changes (e.g., difficulty with memory and thinking)
- Sexual dysfunction
- Emotional changes (e.g., anxiety or mood swings)
- Depression
Getting diagnosed with a long-term health condition is a significant life change, and some people may experience depression as they consider how both their daily life and long-term plans may have to change. Family and friends can help by listening and supporting their loved one as they process the news.
“Simply just listening can be a helpful tool in supporting someone experiencing depression,” says Tahara DeBarrows, a a Grfow Therapy licensed marriage and family therapist who specializes in depression. Creating a safe space for the individual by not judging their statements allows them to relieve pent-up thoughts and emotions that may be bothering them.”
Among the less common symptoms of MS are speech problems, loss of taste, swallowing problems, seizures, breathing issues, hearing loss, and tremors, according to the National Multiple Sclerosis Society.
How MS Affects Your Body
These symptoms are the direct results of myelin damage in the central nervous system, according to Johns Hopkins Medicine’s multiple sclerosis overview. These direct symptoms in turn can lead to secondary and tertiary symptoms.
Secondary symptoms are complications related to primary symptoms, such as:
- Bladder issues can cause urinary tract infections
- Paralysis can lead to bedsores
- Losing mobility can lead to decreased bone density, muscle imbalances, trouble breathing, and trouble swallowing
Tertiary symptoms may happen as a result of combined primary and secondary symptoms:
- Loss of livelihood because someone diagnosed with MS can’t drive or walk to work
- Strained personal relationships because of the stress of dealing with chronic illness
- Depression, related to mood changes and anxiety, as well as the significant life changes
How to Cope With an Multiple Sclerosis Diagnosis
If you know someone living with multiple sclerosis, receiving the diagnosis yourself can feel scary. But remember that everyone’s course is different, and the condition progresses over time. Your care team is the best source of support and information. Below, find five guidelines for coping with the diagnosis.
Make the Appointment
If you’re experiencing a symptom that worries you, make an appointment with your primary care provider who can evaluate you and determine if a specialist consultation is necessary. Jumping to a conclusion is tempting when we’re afraid and unsure because it resolves the uncertainty. But make every effort to hold off until you have an expert’s opinion.
Understand How a Diagnosis Happens
There isn’t one specific test that health providers use to diagnose multiple sclerosis, according to Cedars-Sinai’s MS diagnosis information. When someone comes in with possible MS symptoms, a team of providers runs a series of evaluations to confirm or rule out the diagnosis. In addition to a complete medical history and physical exam, these tests could include a neurological exam, MRIs, blood tests, an eye exam, a spinal tap, and a test called “evoked potentials,” which measures your brain’s messaging system.
Try Not to “Write the Ending”
Multiple sclerosis is a lifelong condition, one that can sometimes cause serious disability, according to Scotland’s national health information service. Facing it can feel scary and threatening, especially if you’ve watched a loved one moving through their own disease course.
However, as you process the diagnosis, keep these three things in mind:
- MS is rarely fatal, according to the NHS’s multiple sclerosis overview.
- Although MS doesn’t have a cure, many of the symptoms are treatable.
- The average life expectancy of someone diagnosed with MS is about 5 to 10 years lower than average; according to the NHS, this gap is shrinking.
Get to Know Your Options
While MS doesn’t have a cure, some treatments reduce the number of relapses, lessen the severity of symptoms, and slow the disease’s progress. Your treatment team will partner with you in understanding the best options based on your age, overall health, how sick you are, and your preferences.
Medical treatments could include medications taken orally, by infusion, or by injection. Another option could be plasma exchange. You can read more about them at the National Institute of Neurological Disorders and Stroke.
Your treatment team may also recommend rehabilitation services, mental health counseling, or equipment such as a cane, brace, or walker. Cedars-Sinai notes that MS rehab specifically can help you regain functioning that’s important to your daily life, be as independent as possible, and involve loved ones in your care.
Create a Well-Being Plan
A common question people ask is: Can you live a normal life with MS? If you receive an MS diagnosis, you may have to make some changes in your daily life, says the National Health Service’s (NHS) information on MS. But many people have long, active, and healthy lives with MS when connected with the right care and support.
That’s why creating a well-being plan can help. Here are several health practices to consider including in yours:
- Self-care: Living with a long-term condition can feel draining and overwhelming; prioritizing mental health support alongside neurological care can help.
- Regular touchpoints: If you’ve been diagnosed with MS, you’ll have regular appointments with your specialists. Also, make sure you have a comprehensive review of your care once a year.
- Eat well: Balanced nutrition can help you manage the fatigue and constipation that sometimes happens with MS.
- Stop smoking: In general, smoking is associated with many health conditions and can make MS symptoms worse. Stopping may also help slow the progression of your MS.
- Commit to exercising: Research suggests that an aerobic exercise program can improve cardiovascular fitness, strength, and bladder and bowel functioning for people with MS.
Mental Health and Well-Being Are Essential
When your multiple sclerosis diagnosis feels overwhelming, getting support from a mental health provider can help. Working with a therapist can relieve anxiety, lessen any depression, and help you and your loved ones adapt to the condition. If you’re looking for support, try using Grow Therapy’s Find a Therapist tool to search providers in your area that accept your insurance.
