Adjusting to Life with Myasthenia Gravis
Last updated: September 2021
I spent days in the hospital awaiting a diagnosis. Finally, I was home at last! When I got home, I had a welcome banner that my children and grandchildren made.
After the ordeal I’d been through, this melted my heart and I was finally at peace... if only for a little while. Now the hard part begins, adjusting to my new life.
Diagnosed with multiple conditions
I didn’t leave the hospital with only 1 diagnosis - I left with 3! I had myasthenia gravis (MG), hypertension, and hypothyroidism.
I was put on lisinopril for my blood pressure, Synthroid for the thyroid, and Mestinon for the myasthenia gravis. I went from taking no routine medications to 3, but there were more to come.
At first, I did ok, but within a day or 2, that changed. I didn’t know what was causing my abdominal cramping and diarrhea, but every time I took my medication, those symptoms hit me like a ton of bricks. I started taking them separately until I figured out which one it was. It was the Mestinon.
Coping with side effects
I researched the medication in detail since I knew it wasn’t something I could just stop taking. Taking it with a meal wasn’t enough. I still had the side effects.
I figured my only other alternative was dairy. So, I tried milk or ice cream or pudding, anything with dairy in it. It worked! Now every time I needed to take Mestinon, I had to have some form of dairy with it or I paid the price.
I also had an appointment with the pulmonologist within a week or 2 and was tested for asthma. Yes, I was diagnosed with asthma and allergies. UGH!
Trying to adjust to change
So now, not only do I have respiratory issues as a result of MG, but also from my newly diagnosed asthma. Here we go again with another medication - actually 4 new medications!
I’m trying to adjust to everything. But now out in the daylight, I’m finding out how sensitive my eyes are to light. When my husband would drive me to different doctor appointments, I had to close my eyes, because my eyes were so light-sensitive.
I continued to have issues with my eyes. It was so difficult to work, since my job at the time, consisted of looking at a computer screen for 8 to 16 hours a day. Not only did my eyes suffer dearly, so did I. I’d get so very tired and would have to take a few breaks throughout the day to rest or even take a nap.
Impact on work
The job I had allowed us to work from home. We could set our own hours to a point, which was a dream come true, especially now.
It took me extra time to complete my work. I no longer had the ability to work as I did before. I needed to work extra hours, which I did. However, I did not turn in the extra hours for payment.
I had been home and working for over 2 weeks, but still no improvement in my eyes. Though only the right eye was closed, both eyes were affected and sensitive. I worked and watched TV with one eye open.
I was so frustrated, I even held my eye open with my fingers, to no avail. Is this ever going to end? Another discussion with my neurologist was in order.
How often do you experience MG exacerbations/flares?