After a Long Wait ... Finally A Diagnosis
Last updated: September 2021
In case you missed it, you can read about the days leading up to Janice's diagnosis in the article, A Major Step Towards Diagnosis.
The day of my Tensilon test finally came. It dragged on and on. Though the symptoms were still present, I was feeling a little better and I just wanted to go home. I was trying so hard to hold it together, but I was losing my patience and understanding fast.
Dinnertime came and went. Still no word on when this test would be done. And once it’s done, what then? Did I have to remain in the hospital or could I finally go home? How much longer before some kind of normalcy returned in my life?
We lost so much
Looking back, it had been a tough year. We lived in the Denver, Colorado area until May 2007. I had gotten ill at Christmas 2006, which I think was a precursor to full-blown myasthenia gravis. I finally recovered, but that was the sickest I’d ever been.
We moved back to where our children lived that spring, but all our possessions were stolen by the moving company. First stressor. Then I lost my dog, whom I dearly loved, in July 2007.
January 2008, we lost our beautiful 25-year-old daughter-in-law in a horrific accident. All this stress added up and affected me even through the myasthenia diagnosis and adjustment.
Though it had been 11 months or more since we lost so much, I was still grieving everything that had happened in 2008 when the myasthenia hit. That made adjusting to my illness that much more difficult. I knew, no matter what the results from the Tensilon test turned out to be, I would still have a lot to deal with.
Worrying about the test
My neurologist finally arrived. He repeated all the warnings, with special emphasis on the fact I could actually code during the test. I signed the consent and the nurses started moving the equipment into the room.
I had already known the crash cart would be in the room until the test was over, but it really hit my husband and me hard when we saw it. All of a sudden that whole miserable year just came rushing back into my mind and then I started worrying.
I could actually see
The neurologists administered the medication while monitoring my vitals and my reactions. Slowly, my right eye, which had been closed tight for over a week, opened. I felt a rush of relief and relaxed a little for the first time in a long time.
It felt so wonderful to actually open my eye and see! Sadly, the euphoria quickly subsided once my eye closed tight again after maybe 5 minutes. Suddenly, I was depressed and disappointed again. I knew it would subside, but didn’t think it would after only a few minutes.
Comforted to have a diagnosis
The test confirmed I have myasthenia gravis. We finally have a diagnosis! Now they can decide on the best treatment for me. I went to sleep that night comforted to know for sure what this ugly disease was, but sad to know it was a lifetime sentence with more adjustments.
The next morning my primary neurologist made his rounds and when he came into my room, he had some of the best news: I could go home that day. YAY! Going home at last.
How often do you experience MG exacerbations/flares?