Facial Numbness Led to My Multiple Sclerosis Diagnosis

Despite a diagnosis of multiple sclerosis (MS), Michelle Clos remains focused on energy management and positive psychology.

Several factors can cause damage to the myelin—the protective sheath around nerves—such as smoking, viral infections, genetics, and simple aging. When the myelin is damaged it can lead to the development of multiple sclerosis (MS)—a debilitating disease causing numbness, balance issues, muscle weakness, and other symptoms. Living with the life-changing symptoms of MS is difficult.

The First Diagnosis

Michelle Clos was diagnosed with multiple sclerosis (MS) in their 30s after an episode of facial numbness. Michelle cut back on their 70-hour workweeks when fatigue crept into life. Now, Michelle finds that energy management, such as napping, can help prevent dizziness and feelings of instability when walking. Through these efforts, Michelle can still run 5Ks and gets great joy in helping other people with MS achieve their goals.

I had my first MS episode in 1990 when I was a senior in college. [One day] I was unable to walk and went to see my healthcare provider. At that time, I was diagnosed with transverse myelitis—inflamation of the spinal cord according to the Mayo Clinic—a neurological disorder related to MS. My healthcare provider said there was a 50-50 chance I would have MS and that I should avoid stress and have a good day.

I left [the appointment] with both the diagnosis and the fear it [my symptoms] would return. I fell asleep every night, wondering if the next day would be the one I couldn't walk. Then I changed my strategy. I focused on what was good and working every day instead of what wasn't. Finally, I decided to put it out of my mind.

In 1994, I had another [MS] episode. My healthcare provider told me there was a medication I could try. But [the availability of the medication] was a lottery system. I didn't feel right taking medication from people who potentially had more severe problems.

At this point in my journey, I was in grad school. I didn't receive an official diagnosis of MS during this episode. My healthcare provider wanted to feel more confident my symptoms were truly representative of MS before giving me a diagnosis.

However, MS is most commonly diagnosed in individuals between 20-50 years old, and females are three times more likely than males to develop the condition, according to the National Multiple Sclerosis Society.

Receiving an Official MS Diagnosis

In 2001, I had more symptoms. The right side of my face and body went numb. That was when I was officially diagnosed. One of the reasons it took so long [for a diagnosis] was that I was in denial. I went to the healthcare provider alone and didn't even think about having my partner go with me. I just wanted to find out for myself. I was on automatic pilot—I was not thinking of the future because it was too overwhelming.

After the numbness went away, I didn't have outward symptoms for a long time. Then, over three years, insidious fatigue crept into my life. I was promoted to a managerial position at work and worked about 70 hours a week.

I started getting dizzy and fatigued, which was a crossroads. I was always going to have MS. Did I want to climb the corporate ladder and let my health and quality of life suffer? And risk not having the energy to do things I wanted to do? So I decided to step down from my position. I moved down to 32 hours and then down to 20. I have found I can work about four hours before taking a nap.

Prioritizing Energy Management and Self-Care

If I don't take naps, I have dizziness and instability when walking, and difficulty finding words when talking. However, I can run and compete in 5k races if I practice energy management. Knowing I can still do those things is what keeps me going.

Another part of my passion is helping others. Shortly after I had decreased my work hours, I started coaching people with MS. I later worked on a national program that uses the principles of positive psychology, which means focusing on and cultivating the good things in life instead of its dysfunctional aspects. I used this to help people enhance their outlook and overall well-being to live better with MS.

I was blessed with my story, and I wanted to give back. It was so rewarding. I believe focusing on and helping others creates positive thoughts and feelings.

I have had to look at my thoughts about MS and what expectations I place on myself. And I'm thrilled to work with people with MS and help them create a plan to achieve their goals. It's nirvana for me to be able to share my experiences with people and help them come up with a plan.

To stay healthy, I try to be conscious of how I'm feeling physically and take care of my needs appropriately. For example, if I'm tired, I let myself rest and make sure I get enough sleep every day. I also have a very supportive partner who does much for me and helps maintain our house.

I take good care of myself. I became a nutrition expert and learned about what I should be eating. I always exercised, but I didn't run. So I started off walking and progressed to running. I have learned the difference between fatigue and couch laziness and how to ignore the latter.

My biggest fear is losing my cognitive faculties since MS can cause cognitive symptoms like difficulty processing or finding a word. Per UpToDate, while MS does not typically lead to dementia, many patients have some degree of cognitive impairment. However, I know I can use tools to help minimize this complication.

I am proactive about the disease and have a strategy for dealing with symptoms. I work to keep the stress in my life to a minimum and embrace positive psychology. I focus on what makes me thrive and do well.

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