National MS Awareness Week

March 10-17 is national Multiple Sclerosis Awareness Week. With the week upon us, I can’t help but realize how it has become so significant to me. I now find myself part of a community I knew very little about before my November 2007 MS diagnosis. So many things in my life have changed since then. Although it is has only been a few months, it seems like a lifetime ago.

November 15, 2007 is a day that I will never forget. After experiencing some tingling and numbness in my legs, I was convinced that the problem would be minor, such as a pinched nerve or a stress fracture brought on by the hours of continual standing and running that my previous job required. Although I was nonchalant about the symptoms I was experiencing, I became worried after the doctor’s assistant called me and asked me to come to the office to discuss the results of my recent MRI. I had been expecting the results by phone. This was the first hint that something serious was wrong with my health. Worst of all, I had to wait three days before I could get in to see the doctor.

On that cold Thursday morning, I remember going to my neurologist’s office a nervous wreck. I didn’t know what to expect. I anxiously sat in the waiting room as the doctor was running late (surprise, surprise). When he finally called my name, he walked in front of me down the hallway. I took some deep breaths. I did not know what he would say.

Once I was seated in the exam room, he flipped on a wall-mounted X-Ray viewer with my MRI results already loaded. I couldn’t believe what I saw. There were so many white spots on my brain that were obviously abnormal. It looked like my brain had chicken pox.

Three distinct white spots appear on my brain MRI

The glowing areas show active areas of
demyelination in my brain

I swallowed hard and stared incredulously at the images in front of me. As he explained the details of the MRI results, I couldn’t bring myself to say anything; I was in shock.

One of the things that I like about my neurologist is that he is a straight shooter. He is very good at explaining things to me in layman’s terms, realizing that my neurology knowledge is limited. He said to me flat out, “What I see is consistent with the early stages of MS.”

Wow - didn’t see that coming.

I started to cry in his office. I tried to hold it in, but the tears just kept flowing. He handed me a box of tissues. After making sure I was O.K. to go on, he explained all about MS and its effects on the brain. We talked for nearly an hour that day about what I could expect next. He recommended a spinal tap to corroborate the MRI results, which I scheduled for the following week. The spinal tap confirmed the diagnosis.

So, that’s it. I have MS.

At that time, I did not know much about Multiple Sclerosis. I went home and immediately began researching everything I could about the disease. Although I knew that MS caused problems with the legs, I did not realize the entire body could be affected. Multiple Sclerosis is a disease of the immune system. The immune system in healthy people defends the body from outside invaders such as viruses and bacteria. The immune system of a person with MS, however, works much differently.

MS causes the immune system to attack the body’s own cells. Slowly, the protective layer of the cell called myelin is worn down from the constant attacks. Decreased myelin slows or blocks the brain’s electrical signals to various parts of the body causing loss of sensation. The areas of decreased myelin form scars on the brain and spine. Multiple Sclerosis literally means “many scars.”

Depending on the particular area of the brain or spine that the disease attacks, a person living with MS can experience a variety of symptoms. Many MSers experience chronic fatigue. Other symptoms of MS can include blindness, bladder control problems, headaches, slurred speech, balance issues, numbness, and paralysis.

One of the difficulties with MS is that it is completely unpredictable. There is no way to know when and where a new symptom will pop up. In my case, my primary symptoms were tingling and partial numbness in my legs and extreme fatigue walking for even shortest distance. However, it is a progressive disease, meaning that things get worse over time. Additionally, there is not currently a cure for MS. A neurologist can prescribe a disease-modifying drug, meant to slow down the effects of MS. There is no way to repair the damage already done; but the hope is that with early treatment, one can delay the devastating effects of the disease for as long as possible.

At the beginning of the month, I was a perfectly healthy 23-year old. Now, I had a chronic disease and faced a life filled with doctors’ appointments, medication injections, and all of the nasty side effects that often accompany treatment. Not to mention the potentially debilitating problems that accompany the disease itself.

I suppose I could have reacted to my diagnosis in a few different ways:

1. 1) Get angry at God, or my body, or even my doctor
2. 2) Sulk and fall into the depths of depression
3. 3) Accept it and move forward

Ok, maybe I make #3 look like the obvious choice, but believe me options 1 and 2 were looking pretty good for a while. It took me several months to fully accept MS as a part of me. Most adults know somebody living with MS or somebody that battled MS during their lifetime. My family and friends were all quick to share stories of loved ones – mostly their successes and how they were managing the disease. Despite the many stories of valor that I heard, I began to look for online communities filled with other MSers who I could relate to and who might provide some first-hand insight into life with MS.

Expecting to hear horror stories and worst-case scenarios, I was caught off-guard when I realized that the majority of online MS communities were awesomely warm and positive places. I made immediate connections and learned so much more about MS living than I ever thought possible. The online forums became a second home for me – a place where I could share my worst fears and be comforted by others who continue to live with the same daily struggles as me.

Without the support of these websites, I would not be as optimistic about my prognosis. Along with the love and encouragement of my family and friends, I am so overwhelmingly thankful for the self-confidence that has been instilled with the help of the online MS community.

I learned from the communities that it’s O.K. to be scared. It’s O.K. to cry. It’s O.K. to worry about the future. Just as important though, it’s O.K. to laugh. It’s O.K. to make fun of myself and the odd things that MS makes me do.

Living with MS is a constant struggle for me and nearly 3 million people around the world. It is a very difficult disease to diagnose and although there has been advancement in treatment, there is not yet a cure. Multiple Sclerosis Awareness Week is important because it reminds us that MS strikes randomly and could one day affect us or somebody we love. It also puts an emphasis on fund-raising to find a cure because no one should have to suffer the destructive effects of this dreadful disease.