I have lived with multiple sclerosis (MS) for over 50 years. It took me years just to get a diagnosis because MS mimics so many other diseases.

I’m writing this story now because I hope it helps others. 

Over one million people in the U.S have MS. And let me make one thing very clear, no two people have the same symptoms. Everyone is different. Your symptoms may start out mild, then increase to a greater severity without rhyme or a reason. One day you may walk normally, and the next you are using a cane, a walker or you may even need a wheelchair to get around. You may have moments when words come out jumbled, or your vision will be blurry.

Not everyone who has MS will need a wheelchair. Some people with the disease may look perfectly healthy.

There are many symptoms of MS. These may include the following: anxiety, poor balance, bladder dysfunction, bowel problems, cognitive changes, depression, dizziness or vertigo, fatigue, mobility and walking issues, numbness, pain, Pseudobulbar Affect (PBA), sexual dysfunction, sleep issues, speech difficulties, spasticity (stiffness), swallowing disorders, tremors, and visual disorders.

It’s a long list of symptoms.

Multiple sclerosis explained

What actually happens when a person is afflicted with MS?

With this disease, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body.  Eventually, the disease can cause permanent damage or deterioration of the fibers. Areas of inflammation and damage are known as lesions. The changes in size, number, and location of these lesions may determine the type and severity of symptoms. While individuals with relapsing forms of MS are believed to experience more inflammation than those with progressive forms of MS, lesions will occur for individuals with all forms of MS. However, the lesions in progressive forms of MS may be less active and may expand more slowly.

In addition to symptoms, disease activity may be evaluated from changes in the size or number of lesions. Frequently, MS may be “clinically silent,” showing no increase in symptoms, yet continuing to show signs of disease activity. 

For individuals with relapsing forms of MS, early and continued treatment with a disease-modifying therapy (DMT) can often slow the “clinically silent” disease activity in the brain, reducing the size and number of active lesions. This is why most neurologists, as well as the American Academy of Neurology, recommend that individuals with relapsing forms of MS begin treatment as soon as possible after the diagnosis is established. More recent FDA approvals have brought new DMTs that also treat active secondary-progressive MS and primary-progressive MS.

Additionally, areas of thick scar tissue may eventually form along the areas of permanently damaged myelin. These areas of scar tissue are referred to as plaques. The term “multiple sclerosis” originates from the discovery of these hardened plaques. Multiple refers to “many;” and sclerosis refers to “scars.”

Lesions and plaques are viewed on a magnetic resonance imaging (MRI) scanner. This technology is used to help diagnose MS and evaluate its progress at various intervals.

Multiple sclerosis is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves and spinal cord. With MS, areas of the CNS become inflamed, damaging the protective covering (known as myelin) that surrounds and insulates the nerves (known as axons). In addition to the myelin, over time, the axons and nerve cells (neurons) within the CNS may also become damaged.

The damage to the protective covering and also to the nerves disrupts the smooth flow of nerve impulses. As a result, messages from the brain and spinal cord going to other parts of the body may be delayed and have trouble reaching their destination – causing the symptoms of MS.

I liken it to a faulty battery on a car. If you try to start the car and the battery is faulty, it doesn’t start. 

With MS, you can hit the brakes, but sometimes the car keeps going. Or the lights go off without any notice. Sometimes you run out of gas.

The unpredictability of the disease

MS is most frequently diagnosed in young adults, although individuals of any age may be diagnosed with this neurological condition. People who are not familiar with MS can easily be confused by its name and its unique symptoms. Most individuals with MS are able to live a full and productive life, with much hope for the future, thanks to the approved treatments and wellness strategies that are available today.

MS is unpredictable. It can cause a variety of symptoms, which for many, can flare-up and then subside over the course of days, weeks, months, or years. While MS is not contagious, its causes are not yet fully understood and researchers continue to search for answers.

At this point, there is no cure. Knowing that has always been a real stumbling block for me. In the beginning, I thought why do tests? There is no cure.

Through the years, I’ve received numerous MRIs, neurological tests, eye tests, and the list goes on. I have also read about every cure or form of relief that came down the line. When I looked at treatment years ago, the side effects leaflet scared me. I remember thinking, “I don’t want any of those side effects.” However, because there was no cure, I was always lukewarm about treatment. In the end I chose not to take any treatment. I do not recommend that to anyone.

Here I have to stress, your course of treatment is an individual decision. I would never want to encourage anyone to do something they didn’t feel comfortable about. Medical decisions are personal. For me, no treatment was the right thing to do. But I know many people that have made great strides with treatment.

Living with multiple sclerosis

One constant about MS is that stress can exacerbate the symptoms. This was certainly true in my case. If I was upset about something, I would get very fatigued. It wasn’t the kind of fatigue I could sleep off. If I did too much in one day, I would need to rest for a week or more. Heat was also not my best friend. Suddenly, spending time outside on a hot summer day would zonk me to the point of feeling faint. 

I remember one extremely hot summer. I had just finished the work day and stopped at the local gas station to fuel up. I usually made conversation with whoever was behind the counter, but on this particular day I couldn’t. I remember not being able to think of words, and I felt if I opened my mouth nothing would come out. I just smiled and limped back to my car. But I was shaken. If I couldn’t talk, or put thoughts together, how could I work?

It was at this point that I became depressed. I was shaken to the core. What would happen to me and my family? A lot did happen, which is personal and doesn’t need to be discussed here, but at this point I was taking MS very seriously.

I had never thought about how serious it could be. Much of that was from the way I was raised by my parents, who taught me I could do anything if I worked hard. That did not hold true with MS. I was beginning to feel hopeless. I had never felt hopeless before. But now I felt like I was carrying a bomb around on my back, and at any moment it could blow, destroying me and everything close to me.

It seems like I spent a lot of years feeling that way. I honestly don’t know how many years it was, but one day I took a long, long, look at my life. 

I wrote the pros and cons on paper to see which list was longer. In the end, I realized I had two choices: I could give up or I could live every minute of my life like it was the last. I chose the latter.

Knowing there was no cure and or what MS could do to me changed my life. And I can’t even believe I’m saying this, but in some ways MS was the best thing that happened to me. 

Having MS meant I had a built-in health meter. If I did too much, I knew it immediately. If I spent too much time with toxic people, I was exhausted. I also learned how to say no. I couldn’t do what I used to do, no matter how much I wanted to. I felt like the world thought I was just lazy. But, eventually…I even learned how to ask for help. None of it came easy. It still doesn’t. 

Fortunately for me, I am blessed to have a good support system. My family and friends know I need their help walking some times. They also know I can’t participate and go to family functions like I used to do. I don’t do holiday dinners anymore. Now I make one thing to take to a dinner being prepared by someone else.

It was hard to let that other person go—the person who raced with her grandchildren, played tennis, or danced. I really miss dancing. 

Focusing on what’s important

I realized if I was going to be happy, I had to focus on what I could do and not on what I couldn’t do. I spend a lot of time writing now. I also enjoy art and making jewelry, painting, felting, crocheting…you get the idea. My house looks like an office and an art studio, and I’m okay with that on most days. I can’t garden like I used to so I do container gardening. You’d be surprised what you can grow in a container.

Actually, it’s as if MS brought me full circle to the things I really love doing. At the age of six I wanted to be a writer and an artist, even though my parents told me I couldn’t make a living off of that. But now, at 73, I do those things and my life is better for it.

Going out requires a game plan. I may need to sleep all week so I can attend a family function, but I do it. I prepare for outings more than the average person. I have to know where I’m going to be and if it is easily accessible for me. If I eat at a restaurant, I study the lay of the land on the way in, so I know I can exit easily. I prefer chairs to booths, and like to have plenty of room for me and my cane. I also have to avoid crowds, more for their sake than mine. I really don’t want to fall on anyone.

I still work part-time—I write and I work as a receptionist. And I feel very blessed to do that. I remember one friend telling me I could probably get disability, but I never did that. I wanted to keep working. Not everyone with MS can continue to work. However, I know many people with MS that lead very fulfilling lives, and many continue to work. They may have had to make adjustments, use wheelchairs, walkers or canes, or limit their work hours. They do what they can do.

I also know many people who have had to go to nursing homes. I admit I wonder if that time will come for me. But I also know that, with or without MS, that is an option at my age.

I have come to know that MS is so very different for everyone. I feel so blessed to be able to do as much as I do, and sometimes I feel guilty about that.

I miss my old life. I miss running in fields. I miss hosting picnics and family dinners, but I am fortunate to have people that still invite me to do things with them and I have family and friends that include me.

I feel for those who have MS to the degree that it prohibits them from doing things they love. I spend a lot of time now talking to anyone who will listen about accessibility. I believe everything should be accessible to all people, regardless of their abilities.

Accessibility is often misunderstood. Often times saying something is accessible means there is an entrance wide enough for a wheelchair. But it is so much more than that. If you go to a park, you can’t take a wheelchair on a gravel road. Even if someone is pushing you, it’s impossible. You can’t get into an outside event such as a picnic area unless the surface is suitable for wheelchairs, walkers or canes. You can’t get into a theatre if there is no ramp or spots for a wheelchair when you get inside. I’m happy to see many movie theaters accommodate people with a variety of disabilities, but much more work needs to be done to make all sidewalks and businesses handicap-accessible.

I pray for those who are limited with MS and can’t do as much as I do. I pray they find a cure. I pray people see, really see, people in wheelchairs and don’t make fun of them. Mostly, I pray people with MS or any disability are included. Please, please, please include them, talk to them, and see them.