a surreal dreamlike storybook image of someone's myasthenia gravis diagnosis story

A Long and Frightening Road To a Myasthenia Diagnosis

I was diagnosed with myasthenia gravis in December 2008. The long road to discovering the diagnosis wasn’t just frustrating, it was a nightmare!

My symptoms began on Thanksgiving Day. The first noticeable symptoms were difficulty breathing, blurred and double vision, and a droopy eyelid.

I would drift off to sleep and awaken with a start, gasping for air. After several hours of those symptoms, I was frightened enough to seek medical attention.

Admitted to the hospital

My first visit to the emergency room (ER) resulted in a misdiagnosis. The ER physician diagnosed me with Bell’s Palsy and I was referred to my physician the following Monday.

I spent the weekend having the same issues and feeling so scared of what was going on with me. After a long and frightening weekend, I saw my physician. He referred me to the ER at another hospital. Numerous tests and hours later, I was admitted to the hospital with a tentative diagnosis of myasthenia gravis.

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About the third night in the hospital, my son and family came to visit. I was having my dinner and nearly choked on a bite of food. Everything had been going fine, when all of a sudden, I couldn’t swallow the bite I had just taken.

There was absolutely no warning! After nearly choking on the food, I got that bite down then decided I didn’t need anymore to eat.

Undergoing multiple tests

I used to work as an operating room nurse in that hospital. So, the next day, some people I worked with came to visit me. We were talking when all of a sudden I couldn’t speak anymore like I had a stroke!

I knew in my mind what I wanted to say, but it came out as gibberish. I mean what else was going to happen? Thankfully, that passed as quickly as it came but would return in intervals for a few months.

During that week of hospitalization, they ran a battery of other tests. This included an echocardiogram, scans of both my legs and head, x-rays, blood tests, swallow studies, and more. They still hadn’t tested me for myasthenia gravis. Anger and frustration were setting in for me and my family. I just wanted treatment and my home.

Getting my diagnosis

After a week of no diagnosis, they finally decided to try the Tensilon test. The neurologist had told me he was going to confer with his twin brother, who was also a neurologist, and do the test together. I had been warned that they would bring in the crash cart as the possibility of a cardiac arrest was very real.

They administered the medication IV and slowly my right eye began to open. The vision difficulties stopped. I felt great! Yes, I felt great, for all of about 5 minutes, if that. The drug quickly wore off and all my symptoms returned. Finally, I have a diagnosis!

After a week in the hospital, I had a diagnosis and could go home on Mestinon. They ruled out needing the thymectomy because I didn’t have a thymus gland. I was able to be released the very next day.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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