A Trip to the Emergency Room with Breathing Difficulty

Several months ago I called my dedicated nurse, Diane, who was assigned to me by my insurance company to help with my myasthenia gravis (MG). I don't know about you, but sometimes it's hard to tell what I need to do for my MG. I was feeling weak, my breathing was a little off, and I was having some difficulty swallowing. It was not majorly different than what I had been experiencing ... or so I thought.

My nurse could tell there was something wrong

I was home alone, but it wasn't quite an emergency where I felt like I needed an ambulance. I'm glad I had this dedicated nurse to call - she's available 24/7 to talk to and ask questions. My husband can also call if he has any questions about what to do for me.

I've talked to Diana quite a few times through our regular check-ups. She could tell right away something was wrong and immediately had me do a single breath count. Well, that single breath count was 17. My baseline at the time was 20 - that's as high as it would ever get.

Diana had me go immediately to the emergency room (ER). She called ahead to let my doctor know why I was going into the ER and offered to call my husband or any other family member I needed on my behalf.

I drove myself to the emergency room and called my husband right away. He stayed on the line with me until I got to the ER. He offered to drive his dump truck 30 miles to meet me at the hospital. As soon as I got into the ER, Diane called me back to check on me.

The doctor lectured me

I went to a small hospital so they got me in right away and found that my pulse and my respiration was just fine, although my blood pressure was a little high. Imagine that! (I have high blood pressure, anyway.)

When the ER doctor walked in, he started asking me questions. I told him that I have seronegative myasthenia gravis and was having a hard time breathing. I explained that my dedicated nurse suggested that I come in and that my single breath count was 17.

The doctor just looked at me and said, "Do you smoke?" And I said, "Yes." Immediately, he started lecturing me on smoking. With all the air that I had, I said to him, "I don't need a lecture right now! I need to know what's going on ... I can't breathe!"

I had to state this twice because he started lecturing me again. By that time, fatigue had set in so couldn't even hold myself up any longer. He immediately stated that I had COPD with testing me, and the X-ray that was ordered of my lungs came back completely clear.

My MG was never addressed

Never once was the MG addressed! The doctor never came back into the room - he sent the nurse in with a handwritten prescription for a COPD medicine called DuoNeb. This medication happens to be an anticholinergic and the pharmacist refused to give me it because of the interactions with Mestinon, stating it would counter act the Mestinon!^1,2

A week later, my primary doctor ran a pulmonary function test for me. The results? Absolutely no COPD or asthma!