This article is part of the Fall 2020 Magazine Issue series. To read the full Fall 2020 issue click: here
When someone is diagnosed with a disease, it is natural to think of the worst outcome — death. However, the reality of a disease is not so black and white, life or death. It’s ups and downs, triumphs and failures. The reality of living with an autoimmune disease such as multiple sclerosis, or MS, is that there are no set rules and is different for everyone that’s diagnosed.
What is MS?
According to the National Multiple Sclerosis Society, MS is defined as, “An unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” Because MS impedes the nerve signals to all parts of the body, symptoms vary from person to person. The severity of MS varies from person to person as well, ranging from mild symptoms such as temporary loss of sight or loss of the use of limbs, to more severe symptoms such as the complete or permanent loss of speech and the ability to walk.
The Reality of MS
The reality of MS is different from person to person and treatment for MS is always changing. It is far from a linear process. For this article, The Current sat down with two people who have had MS for over a decade of their lives.
Denise Gilson, 50, lives in Michigan with her husband Tim and their two children Tyler and Sara. Gilson was diagnosed with MS when she was 35 years old. Since then, she has used two different treatments to manage her MS, weekly injections for eight years and a pill once a day for seven years. At the time of the interview, Gilson was planning to start infusions for treatment, however due to COVID-19, the infusions have been postponed until further notice.
Greg LaManna, 37, lives in Ohio with his wife Shauna and their two sons, Gavin and Garrett. LaManna was diagnosed at 18 and has been living with and managing MS for longer than he has lived without it. Since his diagnosis, he has gone through two courses of treatment, starting off with daily injections and now on a daily pill.
Causes of MS
There is no one clear cause of MS, but it is believed to be caused by a myriad of environmental and genetic factors. The signs and symptoms of MS vary widely and can present themselves as something as mild as fatigue or as severe as loss of sight or feeling in one’s limbs. According to the Mayo Clinic, some people with severe cases of MS, “lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms.”
In the United States, nearly one million people are living with MS (according to a study founded by the National MS Society). Most people living with MS are between the ages of 20 and 50—although it can and does occur in young children and older adults. MS is three times more common in women than in men suggesting that hormones play a strong role in determining susceptibility to the disease. In general, anyone you know could be living with MS unbeknownst to you, if they don’t have severe symptoms.
A timely and accurate diagnosis of MS is critical in managing the disease. For many diseases, there are a plethora of tests that healthcare professionals can administer to diagnose a patient, such as CT scans, MRIs and PET scans — all of which can aid in diagnosing diseases. However, for multiple sclerosis this is not the case. Unfortunately, there are no laboratory tests that can ultimately determine if someone has MS, and because the symptoms vary so widely between people it is hard to diagnose MS.
Doctors use several strategies to determine if someone meets the diagnostic criteria. According to the National Multiple Sclerosis Society there are three key things that a physician must do in order to diagnose MS. They must, “find evidence of damage in at least two separate areas of the central nervous system, or CNS, find evidence that the damage occurred at different points in time and rule out all other possible diagnoses.”
LaManna first began experiencing MS symptoms when he was 18, right after his high school graduation. It started with loss of control over his arm. When he tried to move it one foot or so to the left or right, his arm would move three feet. When LaManna was celebrating his graduation, while visiting his uncle in New York, he began to feel increasing pain in his arm that he describes as feeling like a pinched nerve. He lost control of his left arm and then, eventually, the entire left side of his body. It took nine days in the hospital for doctors to officially diagnose LaManna with MS and start the treatment process.
Gilson began to experience MS symptoms when she was 35. She began to lose sight in her left eye, and when it kept getting worse day by day, she went to see her eye doctor. Her eye doctor examined her and asked a series of questions which led him to believe she had MS. Gilson stresses that this was a stroke of luck. In 2005, it was rare for MS to be recognized immediately. Her eye doctor referred her to a neurologist who then officially diagnosed her and began planning a treatment course.
Just as there is no clear cause for MS, there is no cure for MS. However, there is treatment available that is meant to manage and mitigate the symptoms. The treatments for MS have been evolving as more is discovered about the disease, and as clinical trials are performed.
There are three typical treatment courses that one with MS would take with the help of a doctor: injectable medications, oral medications or infusions. There are eight injectable medications some of the most commonly used ones are including Avonex, Betaseron and Glatopa. There are six oral medications including Tecfidera, Gilenya, Mayzent and more. Finally, there are four types of infusions: Lemtrada, Novantrone, Ocrevus and Tysabri.
Unfortunately, in some cases of MS none of these treatments are effective in treating it. While immense progress has been made in regards to MS treatments, there are some forms of the disease that are still untreatable. In those cases, people might not seek any further treatment, or they might turn to more holistic approaches to help manage their symptoms.
While the listed treatments are some of the current U.S. Food and Drug Administration’s (FDA) approved drugs used to treat MS, there are other drugs and treatment processes in testing stages; as MS itself evolves so do the treatments. These other treatments include disease modifying therapies, the goal of which is to delay the progression of MS and limit new disease activity.
When Gilson was diagnosed, the only available treatments were injections. After she went through several rounds of steroids to get the initial exacerbation of MS under control, her doctor came up with a long-term treatment plan. Gilson had to self-administer weekly injections of Avonex to treat her MS. She said that after every injection, she would experience flu-like symptoms of exhaustion and lack of appetite for a day or so.
After eight years of weekly injections, Gilson was able to switch to taking a daily pill, Tecfidera. “Once I got on the pill I swore I would never go back to injections,” said Gilson. She said the pill would make her flush red after taking it on occasion, but the symptoms were nowhere near as bad as those from the injections. Gilson said she was looking forward to beginning transfusions to manage her MS, because she will no longer have to worry about taking a daily medication and filling a prescription.
LaManna also started treating his MS with injections, however his were daily injections of copaxone he had to self-administer as well. There were some drawbacks to the daily injections. “If you nicked a vein or an artery and [copaxone] got into your bloodstream too fast it basically felt like someone poured gasoline on your body and lit you on fire,” LaManna said. “You couldn’t breathe. Your whole chest would tighten… It only happened to me less than ten times.” LaManna said the feeling would pass on its own after about 10 minutes, but the first time it happened to him he didn’t know what it was and he went to the emergency room. After around 12 years of injections, LaManna switched to taking a daily pill to manage his symptoms.
Another part of treating MS is managing exacerbations or flare-ups. Exacerbations of MS are caused by inflammation in the central nervous system which damages the myelin that coats the nerve fibers. When this happens, it damages the transmission of nerve impulses which in turn causes the symptoms of MS to flare-up. Most exacerbations can and will gradually resolve themselves, but severe exacerbations require treatment. An exacerbation is considered severe when the symptoms include extreme weakness, loss of balance or loss of vision as well if the symptoms interfere with a person’s general safety and ability to function. When severe relapses happen, one’s healthcare provider will likely recommend treating it with a high dose of oral corticosteroids.
LaManna considers himself fortunate because he has not had an exacerbation since his initial diagnosis. Gilson has had three exacerbations since her initial diagnosis. She had to go to the hospital for each one and received steroids each time to get the exacerbation under control.
All of these methods of treatments are just the basic means of living with MS. Injectable or oral medications and infusions simply delay the progression of the disease and mitigate symptoms and the steroids help combat relapses. However, depending on the severity of one’s MS, they might have to take additional medication to help with other symptoms. These symptoms can include emotional changes, pain, fatigue, bladder issues, tremors, depression, dizziness and more. There are a variety of medications that can be used to treat those symptoms. It depends on the patient and what their doctor recommends.
Costs of MS
Having an autoimmune disease, such as MS, not only affects one’s body, it also affects one’s mental health, family and their finances. Gilson said that beyond the initial impact MS had on her eyesight, she struggles with symptoms of what she calls cognitive fog where she becomes forgetful when tired. “Think of a day when you are just absolutely exhausted, multiply it by five and think of going through that every day,” Gilson said. “That’s your everyday life.” She also loses her train of thought, has occasional balance problems and has issues with her eyesight when she’s stressed. Gilson said that the worst part of MS was, “when my kids were younger. It could not have happened at a worse time, the kids wanted to do so many things and I was so tired…mentally that’s probably the worst part.”
For LaManna, one of the biggest changes in his life was becoming right-handed due to MS. He never regained full feeling back in his left hand and so he had to learn how to write and throw with his right hand. LaManna also mentioned that no matter how severe one’s MS is, it is life altering. “The way that it changes your life,” LaManna said. “Physically it sort of changed me…The other thing is mentally. I have a wife and kids and my life expectancy is between five and eight years less than folks without it. I can’t get life insurance easily. It takes things from you.”
The actual cost of MS is another burden those with the disease have to bear. “Treatment is affordable if you have insurance,” Gilson said. “If you don’t have insurance it’s just absorbent. It’s absolutely ridiculous how much it costs. My Tecfidera was up to $78,000 a year. If you don’t have insurance it’s unattainable.”
Resources for those with MS
There are many resources available to help those with MS with financial burdens. The Edward M. Dowd Personal Advocate Program aims to provide a support system to help those with MS that might not have a reliable support system in place. Another resource is MSconnection.org which, according to the National MS Society is, “a social networking website and community for people living with MS, their loved ones and experts to connect in a safe and secure environment.” For financial needs, there are a lot of programs that aim to help those with MS afford payment for their treatments. The Multiple Sclerosis Foundation has dozens of grants that those with MS can apply for.
Living with MS
Beyond the treatment, the cost and and the initial shock, there are positives to MS. “I think it provides focus,” LaManna said. “For me, I got it at a very young age…I used it as a motivation and reason to succeed.”
When asked about advice for those who have been recently diagnosed with MS, Gilson said, “Reach out, reach out. Hopefully your spouse is supportive, if you have one, my husband will really know when I’m having a bad day and what’s going on. Talk to your spouse about it. Talk to your kids. Talk to your family. And use your resources. Just dive into it and find out the best modality of treatment for you. There’s so many places that will help you.”
LaManna wants those with MS to know, “it gets better. It’s a lot to process but again, there are so many medications now and so many ways for you to be able to live a relatively normal life and there’s so much support. You’re not alone. It’s not a death sentence, it’s not going to end your life. You could go on to live a very happy life but you’ve gotta do things differently. It will change your life, it won’t end your life or ruin it. Find a way to still do things you love, enjoy and bring you peace.”
The treatments for MS are always evolving and improving with time. Like Gilson and LaManna, one can live a long, happy and fulfilling life with MS. It’s a matter of adapting one’s perspective, finding a support system that works for you and taking the good days with the bad.
Sara Gilson is a senior studying Professional Writing with a focus on editing. After graduation she hopes to work for a publishing house. When she’s not in class Sara can be found at work, copyediting for The State News. In her limited free time Sara enjoys reading young adult books, spending time with her cat and watching the latest movies. You can follow her on Twitter @saragilson13