Sometimes it’s a compilation of many things that make you realize that something is seriously wrong. For me, one of the warnings was four years ago when I was on vacation panning for gold on the Merced River in California with my husband, Doug and other family members. I found myself slipping on the wet rocks much more than expected. Confused and eager to keep up as normal, I went out and bought a new pair of shoes to better equip for the conditions. However, the shoes did not solve the problem and I found myself much more exhausted than everyone else. This was not the norm for me!
At the time, I was semi-retired after a long, wonderful career as an educator and had planned for an active and engaging retirement. Doug and I had completed a 50-mile bike ride and had many hiking and kayaking adventures and were excited to continue this retirement life-style.
I found myself so exhausted after even small tasks and too weak to complete any type of endurance activity. Climbing stairs, lifting objects, and even eating became overwhelming tasks. I began researching my symptoms and found out about Myasthenia Gravis. It took perseverance and many tests to get a sero-negative Myasthenia Gravis diagnosis and to begin treatments (Mestinon and Prednisone). I was also diagnosed with Hashimoto’s Thyroiditis, another autoimmune disease. In October 2015, I was hospitalized in the Neuro-Intensive Care Unit due to an MG breathing crisis. I started receiving IVIG treatments along with an increase in Prednisone. After the hospital stay, I continued these treatments but still spent many hours each day in bed. My quality of life was so greatly diminished that I qualified for home health care support.
In 2016, since I wasn’t getting any better, I started taking the immunosuppressant, Imuran. After 2 years and some dosage adjustments, this treatment appears to be helping. I have had times where I can again enjoy my time vacationing in Lake Michigan with Doug. On my “good” days I may be able to walk on the beach and kayak. These are activities I love and used to do with ease.
The treatments, unfortunately, are not a cure.
I am tackling my 4thMG Walk this fall. I know how lucky I am to have the supports needed to battle this debilitating disease and would like to be – that beacon of hope – for others struggling with the frustrations MG. I appreciate everyone's assistance and support to me and to the MG Foundation. Hope to see you on Sunday, Sept. 9th!!!