Difficulty Breathing: One of Many Symptoms with MG
I’ve already discussed one of the first symptoms I had when this disease reared its ugly head. You can read about that in the article, Myasthenia Eyes and the Emotional Toll. The breathing symptoms came along within hours of the eye issues. This was the first of my early symptoms that really scared me.
For some reason, that I didn’t understand at the time, I kept falling asleep and would awake with a start. I was gasping for air. Once I’d get my breathing under control, I’d fall asleep, and then it would start over again. This went on for most of the day.
My husband worked nights and was in bed asleep, oblivious to what was going on with me. Since our Thanksgiving was going to be held the following Saturday, most of the family was off doing their own thing and I was alone.
I became very frightened about the breathing “thing”. It had gotten so bad that I sent one of my sons to wake his dad. I was ready to go to the emergency room and I was afraid to go to sleep that night.
Low oxygen levels
My husband and I talked about my symptoms and decided it was time to seek medical attention. Off we went to the nearest hospital, which was about 20 minutes away.
We finally arrived at the hospital and then it became a waiting game. With a breathing problem, I was left sitting in the waiting room for about an hour before they even took the time to check me in.
There isn’t a lot I remember of this visit, so I had to discuss the chain of events with my husband. I was put on oxygen because my oxygen saturation was around 86 to 88 percent. Among the battery of tests, I had bloodwork and chest x-rays done.
My husband said several doctors came in to talk to us and examine me. In order to go home, my O² saturation had to be 94 percent or above.
Diagnosed with Bell's palsy
By this time I was so tired of just being there. When my oxygen saturation would begin to drop below 94 percent, I’d take deep breaths to get it back up because I wanted to go home so badly and sleep in my bed. I felt that they weren’t doing enough to figure out what was wrong anyway!
That wasn’t the smartest thing I've ever done, but it worked. I definitely do not recommend anyone do anything so foolish when your health and well-being are concerned. I did it and survived, but I was very fortunate!
They did keep me for observation for a few hours, but eventually, I got to go home, with a diagnosis of Bell’s palsy.
Back to the hospital
I was told to follow up with my primary care physician on Monday. This was Thursday! I had to go 4 days at home with symptoms of myasthenia gravis. My breathing difficulties could have turned into a myasthenic crisis, but at that time, no one even considered I could have myasthenia gravis.
I dealt with these issues all weekend. By Monday, I was exhausted and still not breathing well. Every little walking trip anywhere, I was out of breath. When my primary care physician saw me that Monday, she immediately sent me back to the emergency room.
Stay tuned for the rest of the story – more to come!
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?