Navigating Myasthenia Gravis: A Personal Journey
Living with Myasthenia Gravis (MG) can be a challenging journey, with frequent fluctuations and health challenges. I have been a patient for years, and in this article, I will share my personal experience and insights on managing the condition.
Declining Strength and Driving Concerns
MG has a pattern of waxing and waning, often manifesting in contrast to my former strength. Currently, I am much weaker than I was, perhaps by a factor of ten. I recall a time when I could easily carry a 200-pound load. Now, 20 pounds feel challenging. Thankfully, my eyes and related symptoms have stabilized, although not to the extent they were before.
When it comes to driving, I am mostly competent but not without caution. Rarely, when I do not feel confident, I do not drive at all. The reasons for not driving include the occasional fatigue and discomfort after dark, despite the physical ability to drive. I almost never drive at night because of these reasons.
Initial Diagnosis and Management
My journey with MG began with severe eye symptoms, which were so pronounced that I limited my driving and wore an eyepatch on my non-dominant eye due to double vision. I was fortunate to have a stable source of healthcare, thanks to Medicare, which has been a lifeline.
Much of what follows, however, is a reference to political discourse surrounding the preservation of Medicare, a crucial financial safety net for many patients. I was appalled by Senator Mitch McConnell's suggestion that long-term contributions to Medicare should be disregarded, advocating instead for its discontinuation. Such a change could indeed be catastrophic for many, including myself.
Without Medicare, I would not have the financial stability to sustain my treatments and lifestyle. The suggestion that long-term contributions should be ignored and Medicare discontinued is simply unacceptable, as it would leave many, including those with chronic conditions, without much-needed healthcare support.
Supporting My Wife with MG
My wife was also diagnosed with MG, but her path was different. She had an undiagnosed condition until it affected her eyelids and caused double vision. She eventually received a diagnosis and appropriate treatment, which included prednisone, a common corticosteroid used to manage the symptoms.
After a significant peak where 40 mg of prednisone was required, she underwent six months of IV Immunoglobulin (IVIG), which visually ended the "peak" of her symptoms. Through a process of experimentation, she managed to reduce her prednisone dose to 10 mg, and she has not experienced any sequella from it. During the height of the COVID-19 pandemic, she brought her dose down to 5 mg, but it was ultimately unsuccessful. She then experimented with 7.5 mg with the goal of minimizing side effects to allow for maximal effectiveness of her COVID-19 vaccinations. However, this strategy did not last long, and she eventually stabilized on 10 mg, which she finds most comfortable.
Our journey with MG is far from linear, and managing the condition requires constant adaptation and careful consideration of each new challenge that arises. The supportive role of healthcare providers, particularly Medicare, has been crucial in our quest for stability and improved quality of life.
Conclusion
Living with Myasthenia Gravis is a journey of constant adaptation and resilience. My experience, and that of my wife, highlight the importance of ongoing medical support and a strong social safety net, such as Medicare, in managing this condition. While the journey is challenging, we remain hopeful and determined to navigate each phase with care and determination.