Living Beyond the Diagnosis

As someone living with Multiple System Atrophy (MSA), I’ve learned the hard way how valuable early detection can be. Reflecting back, the early signs were there: I experienced unexplained dizziness upon standing, a symptom known as orthostatic hypotension. There were also subtle changes in my movement, similar to early Parkinson’s disease symptoms, like slight tremors and rigidity. These were accompanied by urinary issues and changes in my sexual function.

Initially, I attributed these symptoms to aging or stress. However, a visit to an MDS (Movement & Disorder Specialist) Neurologist brought the unexpected diagnosis of MSA. Early detection, though not altering the prognosis, could have been crucial for several reasons. Firstly, it could allow me to make informed decisions about my quality of life. I could adapt my lifestyle to manage symptoms better and seek out support networks, which could make a significant difference.

Interestingly, certain sleep disorders can be linked to MSA. Rapid eye movement (REM) sleep behavior disorder (RBD) is a significant early sign of Multiple System Atrophy (MSA), with 69% to 100% of MSA patients experiencing it according to NCBI. RBD is characterized by muscles not relaxing during REM sleep, causing patients to act out their dreams, sometimes dangerously. This symptom is strongly associated with neurodegenerative diseases, including MSA. Recognizing RBD can be a key to early detection of MSA, potentially leading to earlier interventions and management strategies. In my case, I was diagnosed with Sleep Apnea in my late 20’s. Could that have been an early indication of my future with MSA? What if … My ENT had a knowledge of MSA (Which they do not!)? What if my PCP had a basic knowledge of MSA (Which they did not!)?  What if I were referred to a Neurologist trained as a Movement & Disorder Specialist (Not all are. Look carefully, because it is a significant difference)?  This topic will be its own complete blog post in the future, but for now, if you suffer from any of these sleep disorder symptoms, please take the time to visit a MDS Neurologist and have a conversation. You can find a list them here.

Importantly, early diagnosis can open doors to participate in experimental drug and treatment programs. These programs not only offer hope for new treatments but also contribute to the broader understanding of MSA. Participating in a trial can feel empowering, as it’s a proactive step in a journey that often feels dictated by the disease.

Understanding the early signs of MSA is critical. If you or someone you know is experiencing similar symptoms, I encourage you to seek medical advice. Early intervention may not cure MSA, but it can significantly improve the management of symptoms and overall quality of life.

~Coach~