Health Check: How I Survived a Rare Medical Diagnosis

This month is Myasthenia Gravis month. I am sure you are thinking: WHAT IS THAT???

And this is why they need an awareness month…

In 1997 I was diagnosed with Myasthenia Gravis. I was 17, ran high school track and field and participated on a cheer-leading squad, but physically things were not going well for me. My legs would collapse when I ran, I couldn’t clap my hands together correctly, I had trouble with my speech, an extremely hard time swallowing food, and I had some serious facial indicators such as droopy eyes and trouble smiling.

This is all to tell you that even with these symptoms I doubted whether there was something wrong with me. I thought I was tired or stressed. I thought maybe I was out of shape. It was extremely frustrating to read aloud in class, not being able to perform at sports practices, and to have licensed health care providers tell me that absolutely NOTHING was wrong with me.

During this very despairing time, a significant event occurred. I had head shots taken for an organization I was a part of. The proofs that the photographer showed me had a full collage of a my facial expressions and there was no denying something was incredibly wrong. I was a teenager and I was embarrassed, but now that I look back I’m so thankful to have had that realization that something was truly wrong and I needed to seek help.

So what was happening? Myasthenia Gravis is often called the silent disease. The National Institute of Neurological Disorders and Stroke says this about Myasthenia Gravis:

Myasthenia gravis is a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs. The name myasthenia gravis, which is Latin and Greek in origin, means “grave, or serious, muscle weakness.”

The hallmark of myasthenia gravis is muscle weakness that worsens after periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often (but not always) involved in the disorder.  The muscles that control breathing and neck and limb movements may also be affected.

Only 20 out of 100,000 people in the U.S. have been diagnosed with MG, although the disease is extremely under-diagnosed. I had the benefit of an early diagnoses, thanks to my relentless father, and a surgical procedure which has significantly improved my quality of life. I am blessed to be in remission from this disease and I had the most incredible Neurologist and surgeon team at USC Children’s Hospital that I will forever be indebted to. I have been considered high risk for both of my pregnancies and I do have to try to maintain my stress levels, but otherwise I’m lucky to be a surviving without any required medication.

Paying attention to your health and any alarming health indicators is incredibly important. Here are some health considerations to ponder.

  1. Make sure to have an annual physical. Sometimes symptoms that are easily ignored like being tired or unexplained weight gain can actually be attributed to something medical (such as anemia or thyroid activity). Most health insurances cover one per year at 100%.
  2. If you have a nagging and annoying symptom that will not go away, don’t ignore it. Go to a doctor. If that doctor passes you off, go to another doctor and keep on until you find someone that will listen to your story with consideration and concern.
  3. Be cautious about medication. I’m not saying to avoid medication. What I am saying is that sometimes medication can cause additional lasting symptoms so be sure to be your own healthcare advocate. Ask questions and positively challenge health care providers so that you understand all the treatment paths available, any side effects and long term plans when it comes to prescriptions to medications. (In my case, my first doctor recommended steroids, and my second doctor recommended surgery. When I went the surgery route I was able to avoid the steroids.)
  4. If you are diagnosed with something serious over the course of your lifetime, seek out others that are experiencing or have experienced something similar.
  5. What you put in your body impacts how you feel. Be kind to your body, treat it like a temple. Eating well, taking vitamins, allowing yourself enough rest, exercise, all these things are important for your daily performance as a human being on this earth. How you feel impacts your attitude, your energy, your productivity and your relationships.

If you have been diagnosed with MG I’d love to hear from you. Be sure to reach out through the contact section of this site.

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