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Breaking the Silence: Multiple Sclerosis

Written by  Susan Dubuque

“Breaking the Silence,” an OurHealth Lynchburg & Southside Magazine series, explores medical and social issues that can be devastating to the individuals and families they affect.

In each article, we address topics that are poorly understood or that no one wants to talk about. We bring these conditions into the light and dedicate our stories to the courageous patients and families living with them and the healthcare providers and researchers who commit their lives to treating and seeking solutions to these enigmatic problems. 

Twelve years ago, when Felicia Correa was pregnant with her son Antonio, she started having headaches on an almost daily basis. Some days, the pain was just annoying, and she could cope. Other days, she was incapacitated and ended up in the ER. Her family doctor diagnosed chronic pregnancy-induced tension headaches. But when the headaches continued after her baby was born, the doctor came up with a new diagnosis — chronic tension headaches.

In late 2012, Correa developed a new and disturbing symptom: numbness on the left side of her body. Medication for high blood pressure seemed to solve the problem. But the tingling soon returned and grew more frequent and intense. During one particularly virulent episode, Correa experienced facial numbness, blurred vision, lack of coordination and difficulty communicating. After visiting an urgent care center, she was sent to a neurologist who ordered a magnetic resonance imaging (MRI). This was followed by a second study, an MRI with contrast. In April 2013, after years of suffering and uncertainty, Correa finally had an answer and a diagnosis: multiple sclerosis.

The signs had all been there. And somewhere at the back of her mind, Correa had had a nagging feeling about what was really going on. “I’ve always been a little clumsy,” she says. “My friends would tease me about bumping into them when we walked. And there were other times when my leg just wouldn’t move, so I would just stand there leaning on the door frame chatting with my coworkers until the feeling returned.”

Early in her career as a nurse, she cared for a patient with MS. “She taught me a lot about the disease,” Correa recalls. “Around that time, Montel Williams was on a lot of TV programs talking about living with MS. I just put the pieces together.”
For most people, a diagnosis of multiple sclerosis would be devastating. For Correa, it proved to be mobilizing. “Not once did I ask, ‘God, why me?’ That is not my right,” she says. “And I always knew things could be worse. I could have had stage four brain cancer.”

The same positive attitude permeates the rest of Correa’s life. She graduated from nursing school in 2010 to become a licensed professional nurse. This was no small feat — for two years, she commuted daily from Ruckersville to Richmond to care for her five children, all under the age of 12. But she’s now working toward her bachelor’s degree in nursing.

Two years after finishing nursing school, Correa accepted a new job and moved to Lynchburg — now in the role of a single parent. As if that weren’t enough, she added football coaching to her daily schedule. “As I child, I was always a tomboy,” she admits. “I would much rather play football with the boys than jump rope with the girls. I started as the team mom, but after one day I just jumped in and helped coach the five- and six-year-olds.”

When she moved her family to Charlottesville in 2014, Correa continued to work as a nurse, to coach youth sports — and to struggle with her MS. “Not long after we moved, I had a serious relapse,” she relates. “This time my right eye was involved, and I had four new lesions on my brain.” For three days, she visited the cancer center for infusion therapy — high doses of steroids. Then she dried her tears and headed to the football field for practice, where dozens of little boys fondly call her Coach Fe.

“Fortunately, I have a great team caring for me. Dr. Kaitlyn Beisecker-Levin [Family Medicine of Albemarle] is my personal physician,” says Correa. “And UVA has a Multiple Sclerosis Clinic. My MS physician, Dr. [David] Jones, and the nurse practitioner, Denise Bruen, have seen me through some difficult times.” In October 2016, another relapse sent Correa back to the hospital and into intensive treatment as an outpatient.

Correa did experience a reprieve from her illness when she was pregnant with her sixth child, Christopher, now one year old. “During my pregnancy, I went into remission, and I actually felt normal the whole time,” says Correa. Unfortunately, after her baby was born, she relapsed.

But nothing could keep Correa down for long, and she renewed her efforts to turn her medical condition into a force for good. In addition to having started a support group for people with MS and their families, she is a district activist leader for the Virginia-West Virginia chapter of the National Multiple Sclerosis Society, where she gives motivational speeches and supports fundraising activities. “When this season ends, I’ve decided to ‘retire’ from coaching and devote my time to supporting the MS Society,” she says. “In fact, my boyfriend, Charles Well, is now training to become a volunteer activist as well.”

Correa even turned her passion for football into an opportunity to champion the cause of MS, when she was selected by the NFL and the Today Show as a finalist in the “Together We Make Football” contest. “I realized that I could use being on national TV as a forum to increase awareness of MS,” says Correa. “As a coach, I teach all my players a simple motto: ‘One team, one sound.’ When we score, we all cheer together, in one voice. Now I have an opportunity to be that one voice that speaks for others who are battling MS.”

Let’s speak out now. Let’s explore what MS is and the causes, symptoms, treatment options and strategies for dealing with this unpredictable disease.

Understanding Multiple Sclerosis

According to David E. Jones, MD, a neurologist at the James Q. Miller Multiple Sclerosis Clinic in the UVA Health System, MS is a progressive, “immune-mediated” disorder. That means the immune system, which is designed to keep the body healthy, attacks the protective sheath of myelin that covers the nerve fibers, causing communication problems between the brain and the rest of the body. The nerves of the brain and spine and the optic nerves are damaged and can eventually be destroyed. Depending on where the nerve damage occurs, MS can affect vision, sensation, coordination, movement, and bladder and bowel control.

Approximately 400,000 people are living with MS in the United States today, and 200 more are diagnosed every week. Although MS was discovered in 1868, its cause remains largely a mystery. Researchers know that the nerve damage is caused by inflammation, but the cause of the inflammation is still unknown.

Symptoms of MS

The signs and symptoms of MS vary widely and depend on the degree of damage and which nerves are affected. Some people experience only mild fatigue and weakness, while others suffer from paralysis, vision loss, and diminished brain function. Some people have long periods of remission without any new symptoms.

The signs and symptoms of MS include:

  • numbness or weakness, typically on one side of the body.
  • partial or complete loss of vision.
  • tingling or electric-shock sensations.
  • weakness or fatigue.
  • vision problems.
  • pains and spasms.
  • slurred speech.
  • tremor.
  • lack of coordination or unsteady gait.
  • balance problems or dizziness.
  • bladder and bowel issues.
  • sexual dysfunction.
  • depression.
  • cognitive problems.

“A number of my patients report feeling an overwhelming sense of fatigue, as if they are wearing a leaden vest or carrying cinder blocks,” says Dr. Jones. “Others find that their silent symptoms of MS — depression and brain fog — are among the most distressing.”

A variety of factors can increase your chances of developing multiple sclerosis, including the following:

  • Age. MS can occur at any age, but it most often affects people between 15 and 60.
  • Sex. Women are about twice as likely as men to develop MS.
  • Family history. If one of your parents or siblings has had MS, you are at a slightly higher risk of developing the disease.
  • Certain infections. A variety of viruses have been linked to MS, including Epstein-Barr, the virus that causes infectious mononucleosis.
  • Race. Caucasians, particularly those of Northern European descent, are at the highest risk of developing MS. People of Asian, African and Native American descent have lower risks.
  • Climate. MS is far more common in temperate regions, including Canada, the northern United States, New Zealand, southeastern Australia, and Europe.
  • Certain autoimmune diseases. You have a slightly higher risk of developing MS if you have thyroid disease, type I diabetes or inflammatory bowel disease.
  • Smoking. Smokers who experience an initial event of symptoms that may signal MS are more likely than nonsmokers to experience a second event that confirms relapsing-remitting MS.

Diagnosing MS

According to the National Multiple Sclerosis Society, no single test can determine whether a person has MS, and accurate diagnosis is made even more difficult by the fact that its symptoms can be caused by a variety of other conditions. Diagnosis thus begins with a complete medical history, a neurologic exam and various tests, which can include MRIs, electrical tests called evoked potentials (EP), spinal fluid analysis and blood tests. To properly diagnose MS, a doctor must

  • Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves,
  • Find evidence that damage occurred on occasions at least one month apart, and
  • Rule out all other possible diagnoses.

Lesions — hardened areas (scars) where myelin has been damaged — appear on MRI scans and are evidence of MS. In fact, “multiple sclerosis” literally means “many scars.”

Dr. Jones offers a point of caution: “Scars that are seen on an MRI of the brain show issues with structure, but not function. Think of it this way — a car may be shiny on the outside but not run well. Or it may look like a clunker but operate perfectly. Therefore, there may be a disconnect between how a person functions and how their MRI looks. To complicate matters further, not every spot on an MRI is a scar of MS. So when it comes to achieving an accurate diagnosis of MS, time is our friend. MS is a chronic disease, and time may allow diagnostic clarity as more symptoms develop and change.”

Course of the Disease

The progression of multiple sclerosis is unpredictable. Most sufferers experience a “relapsing-remitting” disease course. That is, they have periods of relapse — also called exacerbations or flare-ups — when new damage in the brain or spinal cord disrupts nerve signals and new symptoms appear or old symptoms return. A true relapse must last more than 24 hours and occur at least 30 days after the last relapse. Relapses can vary in length and severity, and many people recover from them without treatment. Relapses are followed by periods of remission that can last for months or even years.

Some people with MS experience a gradual onset and steady progression of signs and symptoms without any relapses. This is known as primary-progressive MS.

Sixty to seventy percent of people with relapsing-remitting MS eventually develop a steady progression of symptoms, with or without periods of remission. This is known as secondary-progressive MS.

Treatment Options for MS

At this time, multiple sclerosis has no cure. But some treatments can slow its progression and speed recovery from attacks. People with very mild symptoms sometimes do not require any treatment.
Three general types of medication are used to treat MS: those designed to modify the progression of the disease, to treat relapses when they occur, and to help MS patients manage their symptoms and improve their quality of life.

Disease-modifying treatments

The U.S. Food and Drug Administration (FDA) has approved a number of drugs to slow the progress of MS and reduce the number of relapses. These include: 

  • Injectable medications (such as Avonex, Betaseron and Copaxone).
  • Oral medications (Aubagio, Gilenya and Tecfidera).
  • Infused (IV) medications (Lemtrada and Tysabri).

Treating relapses

MS relapses are caused by inflammation in the central nervous system that damages the myelin coating of nerve fibers. This damage slows or disrupts the transmission of nerve impulses and causes the symptoms of MS. Most relapses gradually resolve themselves without treatment.

For severe relapses (such as those involving loss of vision, severe weakness or poor balance), most neurologists recommend treatment with corticosteroids. The most common treatment is a three- to five-day course of high-dose intravenous corticosteroids to reduce inflammation and end the relapse more quickly. This treatment may be followed by oral prednisone.

Managing symptoms

Physicians prescribe a wide variety of medications to address the equally varied symptoms of MS, which include depression, pain, infections, stiffness, spasms, bladder and bowel problems, sexual dysfunction, dizziness and vertigo. “The average cost for MS medications can range from $65,000 to $85,000 per year — depending on if the medication is a brand name or generic,” says Dr. Jones. “Fortunately, many of the pharmaceutical companies provide medication assistance to individuals who don’t have medical coverage.”

Living with MS

A number of strategies can help individuals coping with MS maintain their health and improve their quality of life.

  • Get plenty of rest.
  • Stay cool. MS symptoms often worsen when your body temperature rises. Avoiding heat and using devices such as cooling scarves can be helpful.
  • Exercise. People with mild to moderate MS are likely to find that regular exercise improves their strength, muscle tone, balance and coordination. Swimming and other water exercises are good options for individuals bothered by heat. Mild to moderate exercises recommended for people with MS also include walking, stretching, low-impact aerobics, stationary bicycling, yoga and tai chi.
  • Eat a balanced diet. While research is still being conducted on the best diet for people with MS, the National MS Society offers some basic guidelines.
    • Limit your sugars and processed foods.
    • Eat more fruits and vegetables.
    • Consume adequate fiber and fluids.
    • Choose lean sources of protein (such as chicken, fish and turkey).
    • Choose heathy fats (polyunsaturated fats from seeds, nuts and vegetable oils).
  • Some studies also suggest that vitamin D is beneficial for people with MS.
  • Relieve stress. Stress can trigger or worsen signs and symptoms of MS. Yoga, tai chi, massage, meditation or deep breathing may help.
  • Balance your gut flora. About 100 trillion bacteria live in your intestinal tract —your gut. These essential bacteria contribute to digestion and support your immune system. A relatively new line of thinking suggests that balancing the bacteria in the gut through diet and supplemental probiotics might benefit people with MS. Additional research may shed further light on this approach.
  • Seek support. Living with any chronic illness can be difficult. Some ways to cope with the challenges of MS are staying connected to friends and family, joining support groups, and sharing feeling and concerns with a doctor or counselor.

“In supporting my patients with MS, I always remind them that every little symptom that appears does not mean they are having a relapse. It may or may not be related to their MS. And I encourage them to remember they are individuals who have multiple sclerosis; they are not their disease,” advises Dr. Jones.

Correa is a great example of this philosophy — she refuses to allow her MS to define her. In fact, she has turned her medical condition into an opportunity to do good for others. Go Coach Fe!

Resources

WALK MS: LYNCHBURG 2017
April 22nd | Check-in opens at 9AM
Walk begins at 10AM
Lynchburg College
1501 Lakeside Drive | Lynchburg

Lynchburg Multiple Sclerosis Support Group
Third Tuesday of each month
From 6-8 PM
305 Salisbury Circle | Lynchburg
Contact: 434.525.1194

South Hill Empowerment Group
Third Thursday of each month
From 5:30 – 7:30 PM
Community Memorial Health Center
125 Buena Vista Circle | South Hill
Contact: Starr | 434.378.2031

MSFriends®
Connects you with volunteers living with MS.
Connect by calling 866.673.7436
Volunteers are available 9 AM to midnight, seven days a week.
All conversations are confidential.

MS Connection
Connect with people who share your same interests, challenges and hopes. Provide and receive support, information and advice related to the topics that shape your world.
www.msconnection.org/groups

 

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