Living Beyond the Diagnosis

When the doctor first uttered the words “Multiple System Atrophy” (MSA), my world seemed to come crashing down. It’s a rare neurological disorder that affects just 1 in 25,000 adults between the ages of 30 and 70. That statistic alone was enough to make me pause and ponder the sheer unlikelihood of my diagnosis.

Let’s break it down for a moment. With about 77 million Americans between 30-70 it comes to about 3,000 of us. Being that “1” is like winning the unlikeliest of lotteries. The chances of being diagnosed with MSA are indeed slim, but here I am, one of the few who’ve drawn this rare card in the game of life.

But what exactly is MSA, and why are its odds so astronomically against us? MSA is a neurodegenerative disorder that affects the autonomic nervous system. It’s characterized by a wide range of symptoms, from problems with movement and coordination to issues with blood pressure regulation and bodily functions. Living with MSA is an ongoing battle, one that’s marked by both physical and emotional challenges.

Imagine your body as an intricately designed machine, with numerous systems working harmoniously to keep you alive and well. One of the key systems that plays a vital role in maintaining your bodily functions is the autonomic nervous system (ANS). This system silently and diligently controls things you might not even think about consciously—your heart rate, digestion, blood pressure, and even sweating.

Now, picture MSA as a disruptive force within this well-oiled machinery. It’s a neurodegenerative disorder, meaning it progressively damages and degenerates the nervous system, particularly affecting the autonomic nervous system. This intrusion disrupts the finely tuned orchestration of your body’s functions, leading to a wide spectrum of distressing symptoms.

The Diverse Challenges of MSA

1. Movement and Coordination Issues: MSA often manifests with symptoms reminiscent of Parkinson’s disease. People with MSA may struggle with muscle rigidity, tremors, and difficulties in coordinating their movements. Everyday tasks we take for granted, such as walking or holding a cup, become monumental feats.
2. Blood Pressure Regulation: Your body’s ability to maintain stable blood pressure is controlled by the autonomic nervous system. In MSA, this regulation goes haywire. It can lead to sudden drops in blood pressure when standing, causing dizziness, fainting, and a constant battle to stay upright.
3. Bodily Functions: Beyond mobility and blood pressure, MSA casts its shadow over the most fundamental bodily functions. It can disrupt your Bladder and other vital organs. Swallowing difficulties may arise, making even the act of eating and drinking a potential hazard.
4. Speech and Voice Changes: The vocal cords may also be affected, leading to changes in speech and voice quality. This can make communication a challenge, adding another layer of frustration to an already daunting condition.

In essence, MSA is like a puzzle with many missing pieces. Its symptoms are often elusive and difficult to predict, making it a perplexing condition both for those who live with it and the medical professionals striving to treat it.

To put the rarity of MSA into perspective, let’s consider a few other events that have a 1 in 25,000 odds of happening:

1. Becoming a Professional Athlete: Becoming a professional athlete in sports like football, basketball, or soccer is a dream for many. Yet, statistically speaking, the chances of making it to the big leagues are roughly 1 in 25,000, but I couldn’t hit a curve ball!

2. Winning a Nobel Prize: Nobel Prizes are awarded for outstanding contributions in fields like physics, chemistry, medicine, and literature. With countless talented minds worldwide, the odds of receiving this prestigious accolade are approximately 1 in 25,000, but my mind is just not “beautiful” enough!

3. Getting Struck by Lightning: The chances of getting struck by lightning in your lifetime? You guessed it—1 in 25,000, and I would have chosen this over MSA!

As rare as these occurrences are, they still happen. And just like with MSA, when they do, lives are forever changed. So, what does it mean to be that “1” in 25,000 who receives an MSA diagnosis? It means facing unique challenges, finding strength in adversity, and becoming an advocate for awareness and research.

In my journey with MSA, I’ve discovered a resilience I never knew I had. I’ve connected with an incredible community of fellow warriors who face these odds head-on. Together, we are determined to make a difference and raise awareness about this rare condition.

The 1 in 25,000 odds of being diagnosed with MSA might seem overwhelming, but they also remind us of the incredible power of human resilience and the importance of cherishing each moment. My journey with MSA has taught me that even in the face of the most improbable odds, we can find hope, strength, and purpose. I have found mine and you can help me reach all my goals. It’s as easy as liking this post, signing up for the newsletter and notifications (bottom right of each page), sharing this page on your Social Networks, and just helping us spread the word that there is a place to go for help and answers. It’s such a simple way to make a difference. Please consider it.