I Was Diagnosed With Multiple Sclerosis (MS) at 31

The first symptom occurred 10 years before diagnosis.

In 2020, more than 2.8 million individuals worldwide had been diagnosed with MS, according to the National Multiple Sclerosis Society. Amy Rowell was diagnosed with multiple sclerosis (MS) in her early 30s. In retrospect, she realized that her first symptom had occurred 10 years earlier when she could not pick up an 8-pound cat while working in an animal shelter. Since her diagnosis, she has gotten frustrated when she had a bad day but hadn't let MS define her or dictate her life.

Experiencing Initial Symptoms of Multiple Sclerosis

I was diagnosed with multiple sclerosis when I had just turned 31, but in hindsight, I had been having symptoms since I was in college. Many people hop from doctor to doctor trying to figure out what their symptoms mean; I wasn't diagnosed because I created excuses for my symptoms.

I clearly remember the first time I had a symptom. I worked at an animal shelter and reached into a cage to get a cat. She was only about 8 pounds, but I couldn't move her. I couldn't pick her up. It wasn't like I was paralyzed, but my arm could not do the movement I was telling it to do. I attributed this to a pinched nerve. I was so young, and the symptoms would go away or improve with time, so I didn't think anything was seriously wrong. I might have a bladder issue or some arm weakness or leg pain, but they meant nothing on their own.

It is a psychological game you play with yourself: It gets easy to dismiss symptoms and make excuses for them. When you are in your early 20s, you don't ever think it could be something like MS. The symptoms that finally took me to the doctor occurred in early 2007. I started feeling hazy or clouded. My movements weren't quite right, and I was groggy. It wasn't like anything I had experienced before. My husband was out of town, so I called my mom for advice. She said to rest and to call her if I didn't improve. That night, I was using my fork at dinner and completely missed my mouth. The next morning, I did the same thing with my toothbrush.

I called my primary care provider the next day and got right in to see him. He sent me to a neurologist who did an MRI that found two suspicious lesions. Because I was so young, he sent me to a specialist. I had a diagnosis within six months.

Coping With Multiple Sclerosis

Finding out I had a condition that I would face for the rest of my life—and one that generally gets worse—was overwhelming, to say the least. That's not even a strong enough word. But I'm the perfect middle child; I'm a fixer and a problem solver.

I liked doing research and overcoming obstacles, so initially, I thought I would immerse myself in support groups, seminars, and workshops. I remember the first seminar I attended on living with MS, which local health professionals gave. It was raining, and my husband dropped me off at the door. By the time he had parked the car and gotten back to me, I told him we needed to leave. I wasn't emotionally ready for it. Many participants were using canes, walkers, or wheelchairs, and it hit me that that might be me one day—I wasn't prepared for it yet.

It has been incredibly frustrating when I have had symptoms or a bad day or days. But I decided it wouldn't define me or dictate my life. I would have to manage it and be aware of the different circumstances that I go through. For instance, I'm really sensitive to temperature changes. Heat really knocks me out and turns my body into Jell-O. We have hot summers here, and even things like a long shower or drinking hot chocolate or soup can affect me. So, if we go for a walk or bike ride or go somewhere like a fair, I always have ice packs that you can squish to get cold. I have a cooling vest that I can recharge. I have to make sure I have a way to cool down.

I had become the executive director at the Milwaukee Animal Rescue Center, and I had one healthcare provider suggest early on that I cut back at work. I knew that would mean shutting things down. If I had another job, staying in bed when needed would probably be easier, but the animals wouldn't care if I didn't feel well.

Knowing people are counting on me inspired me to be at work even when I was not feeling my best. I have a really good group of volunteers who know that if I can do something, I will. If I need to ask for help, there are always people there to help me out. I have a lot of support. My sisters and mother live nearby, and I have a lot of great friends. You learn very quickly whom you can depend on and who will help you without having to repay them every time. I was at a restaurant with a friend once, and I knocked over a glass. Sometimes I do that—or drop a fork—and you can look intoxicated. I looked over at my friend and sighed, and she knocked hers over, and we just laughed.

As told to Tammy Worth.

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