Conditions

Coping With a Multiple Sclerosis Diagnosis

“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 […]

isbell oliva garcia grow therapy By Isbell Oliva-Garcia, LMHC

Updated on Jan 12, 2024

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“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:

  1. 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. 
  2. 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.
  3. 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.  
  4. 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:

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: 

Tertiary symptoms may happen as a result of combined primary and secondary symptoms:

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:

  1. MS is rarely fatal, according to the NHS’s multiple sclerosis overview.
  2. Although MS doesn’t have a cure, many of the symptoms are treatable.
  3. 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: 

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. 

FAQs

  • Over 2.8 million people around the world have multiple sclerosis, according to a National Multiple Sclerosis Society study in 2020. Nearly one million of them live in the United States. Hopkins Medicine’s article on MS breaks that number down: about 200 people are diagnosed with MS every week in the United States.

  • MS diagnoses are also more common in women than men, the article goes on. Four times as many women have MS as men.

  • MS usually develops and gets diagnosed in adults between 20 and 40. However, some people start experiencing MS symptoms even earlier in life; this condition is called early onset multiple sclerosis (EOMS), according to a Neurological Science article. Here are four things to know about this condition: - Vision loss is often an early symptom of EOMS. - EOMS is more prevalent among females. - The EOMS disease course is usually relapsing-remitting. - There’s a high rate of recovery from the initial attack.

  • Both MS and amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease) destroy the brain and spinal cord’s ability to control the body’s voluntary muscles. But an ALS Association article says the similarities end there. MS is an autoimmune disease that damages the protective sheath around the brain and spinal cord; this keeps them from sending signals to motor neurons throughout the body. ALS, on the other hand, causes the motor neurons themselves to die.

  • The prognosis is usually very different: Someone with MS may live another 25-35 years, but ALS life expectancy is between 2-5 years.

  • Women with MS can have a normal pregnancy, deliver a healthy baby, and breastfeed if they choose, according to the National Health Service’s MS guidance. MS doesn’t affect their ability to conceive, either. The immune system tends to “turn down” during pregnancy, says Barbara Giesser, MD, a neurologist and MS specialist interviewed by the Pacific Neuroscience Institute. This means women with MS may experience some relief from MS “exacerbations.” MS also doesn’t interfere with the menstrual cycle, though some women may find their MS symptoms change or worsen during their cycles.

About the author
isbell oliva garcia grow therapy Isbell Oliva-Garcia, LMHC

Isbell Oliva-Garcia is a licensed mental health counselor, bilingual in English and Spanish. Isbell specializes in treating individuals with depression, anxiety, and issues during difficult life transitions.

This article is not meant to be a replacement for medical advice. We recommend speaking with a therapist for personalized information about your mental health. If you don’t currently have a therapist, we can connect you with one who can offer support and address any questions or concerns. If you or your child is experiencing a medical emergency, is considering harming themselves or others, or is otherwise in imminent danger, you should dial 9-1-1 and/or go to the nearest emergency room.

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