a woman outside faces down a hospital building

A Major Step Towards Diagnosis

Last updated: August 2021

At this point in the ongoing recount of my hospitalization and diagnosis of myasthenia gravis (MG), more new symptoms kept rolling in 1 or 2 at a time. Every day there were tests. I barely had time to think about what was going on or rest. I was at the point now of wondering what’s next and how do I deal with it all?

Running out of patience

Now that the tests were done for my swallowing issues by an otolaryngologist, I was referred to others. They were concerned about my heart and whether I’d passed a blood clot. My next tests were another EKG, echocardiogram, and an ultrasound of both my legs. Thankfully, no clots were found and my heart was in good condition.

Still, no test for myasthenia and my family and I were running out of patience. My husband was telling me my face was somewhat distorted. You mean my right eye wasn’t enough, now my facial features seem to be sliding off my face?

Not only was my eyelid drooping (ptosis), but my lower lid was drooping slightly and the corner of my mouth was turning down as if I’m frowning on one side.

My lungs are weak

I had been having trouble with swallowing and talking, but the worst of it didn’t last long. However, now I’m feeling a hint of some weakness in my neck, but I’m barely noticing it. Because I had difficulty breathing, I’m now seeing a pulmonologist.

Out came the incentive spirometer. Now that was checked each nursing shift. Here’s where I find out just how weak my lungs really are. I used to play a clarinet and sing, I was used to hard work. First as a farmer’s daughter, then a nurse, so my lung capacity had always been great!

My oxygen saturation used to be right at 99 percent. I was really working to keep it above 90 percent and hoping to get it to at least 94 percent. We hadn’t discussed that I had been on oxygen since my emergency room visit – and was still on it.

With the oxygen, I was maintaining around 97 percent to 98 percent. As a nurse, I know I was going nowhere until it stays consistent at a minimum of 94 percent.

Preparing for the Tensilon test

Now, we were getting very close to the test for myasthenia. My neurologist informed me Friday evening they would do a Tensilon test on me. I was a nurse, but a surgical nurse. I wasn’t familiar with the Tensilon test. He explained he and his twin brother would administer the test on Friday evening.

I discovered he hadn’t administered the test yet because he wanted his brother there in case the test went “south”. His brother worked at another hospital and he was required to get physician privileges at my hospital before he could see patients there. We also had to wait for the administration to sign off on his privileges.

Well, that Thursday, my family and I finally found time to get together with our research. I must say, I wasn’t that nervous about the diagnosis, but my husband and our children were. At the time, I had no idea how worried they were.

To be continued...

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