Living with Myasthenia Gravis
Image captured by Tasha Thomas @ Armstrong Woods in Guerneville, CA
I would be remiss to say that Myasthenia Gravis (MG) has changed my life. When I was first diagnosed, I thought it was the worst thing that ever happened to me. As I grew older, I began to embrace my diagnosis because I couldn’t continue to be bitter and well… it wasn’t going anywhere. So here I was 21 years old, I had no real idea what’s happening with me. I’m just trying to deal. Prior to my diagnosis, I was experiencing strange and random things happening but there was no rhyme or reason. For example, one day I was at work (grocery store) and I couldn’t lift a gallon of milk. One day I was walking to the front door and I was carrying a soft drink; it dropped from my hands with no explanation in sight. I would be driving and all of sudden, I would start to see double. It was so frustrating because I truly didn’t know what was happening.
So, I started going to the doctor for different issues. At the time, I was not having these symptoms at the same time. I would have a droopy eyelid for 2 weeks but my hands and legs were fine. I actually didn’t have any issues walking until after my diagnosis. I started going to the doctor in November 2001 and was diagnosed in March 2002. During that time, I went to the doctor 46 times. Yep, you read that right, 46 damn times with no results. The nurses tried to put me on 3 different pain medications even though I was clear that I was not experiencing pain. It was driving me crazy! One day, I went to my doctor’s appointment and I said “Look, here’s everything that’s happened in the last few months. Something is not right. I’m not leaving here without some answers.” The nurse practitioner quickly called a neurologist because she was certain that it was nerve related. The neurologist ordered a series of blood tests. I had results before I left the office and it was confirmed that I was living with Myasthenia Gravis. The doctor recommended that I get a 2nd opinion, I agreed and did just that.
I was so happy to have an actual diagnosis and not be in the dark. I was able to research and learn more because the doctors weren’t that helpful. Now, we started talking about the various treatments. I was immediately put on medication to help the symptoms while we discussed and decided on long-term treatments. What a head-spinning experience. Surgery, medication, IV treatments, plasmapheresis. Oyy, it was so much! Eventually, I had surgery. I had a thymectomy in 2003. This is the removal of the thymus gland. Doctors (at the time) did not have a clear understanding of the link between MG and the thymus gland but they definitely knew that the majority of people living with MG had something wrong with their thymus gland. Mines was enlarged but not cancerous. One of my biggest issues was all of the long-term treatments required 6-12 months before seeing any results so you felt like you were going in blind every time. I was also put on an immuno-suppressant which was designed to help the disease. Over the years, I’ve had 7 IVIG treatments as well. These are designed to get you really strong, really fast. They worked so well for me but they are sooooo expensive. One treatment costs ~$125,000. My insurance company hated me with a whole passion.
I’ve lived in fear of not being able to do anything for so long. I’ve been to the emergency room so many times that I’ve lost count. I’ve not been able to eat for months at a time because I couldn’t swallow. I couldn’t drive for about a year. I couldn’t walk for a long time as well. I dropped out of college because I didn’t know what else to do. My family has helped me at my worst (and my best) and I am so thankful for them. I’ve quit a job because I got sick several times dealing with the stress that came along with my position and industry. It hasn’t been easy for me BUT let’s not get it twisted. I am not looking for your sympathy about my past. I’ve made the best of it for sure.
Fast forward to today… I haven’t had any emergency room visits in almost 10 years. I’m completely stable on my medications. I regularly do lab work and connect with my doctors. I live a great life and function with the best of them. Up until June 2019, there was one lasting effect from the Myasthenia and that my friends was FEAR.
~Tasha