Going Through Testing for Myasthenia Gravis
Last updated: September 2023
After experiencing difficulty breathing and having vision problems, I still had no diagnosis. I was home for the long Thanksgiving weekend when Monday finally came. I called to make my appointment with my primary care physician for the afternoon.
It took all the energy and breath I had to make it from my car to my physician’s office. I had to stop and rest several times along the way. When it was my turn to go to the exam room, my physician looked at me and took my vital signs.
It might be MG
She promptly got a wheelchair and sent me to the emergency room. This was a different hospital from where I was previously. This was the one where I had worked for nearly 15 years. I felt more confident I’d receive the help I needed.
I still didn’t have any new symptoms, the ones I had were bad enough. I went through numerous tests, still with no diagnosis! I had blood work, chest x-rays, oxygen, and no conclusive diagnosis.
However, this time, I had physicians that seemed to have an idea of what was wrong. In fact, the evening emergency room physician came on duty and was brought to my room.
They had discussed my case and came to the room together. The new physician looked at me and told me right then, he thought I had myasthenia gravis.
Seeing a neurologist
I was finally admitted to the hospital and settled in for the night. I was scheduled for tests and to see a neurologist the next day.
The day started off quite busy. The tests started about 6 AM with my first round of blood tests. Later, I met my new neurologist for the first time. He also confirmed with a tentative diagnosis, that I had myasthenia gravis.
He told me about the Tensilon test and that he planned to do that later in the week. In the meantime, I would be seeing several other specialists.
Lung function tests
The next specialist I saw was a pulmonologist. I had a lung function test via the incentive spirometer. Of course, with uncontrolled myasthenia, the results were well below what is considered normal.
Therefore, I used it a few times a day, while in the hospital. The next day he also ordered a chest x-ray and CT scan. Again, there was nothing that would indicate a firm diagnosis.
Normal cardiology results
Then the cardiologist came next. I went through about every cardiology test. I had an EKG, echocardiogram, and scans of both legs. Again, nothing was found!
The results were normal, even though I’m already not a “spring chicken.” Cardiac complications can occur with myasthenia gravis, and I am nowhere close to being in good physical condition. Now that surprised them! So I’m done with cardiology. Yay!
Waiting for answers
They might do 2 or 3 tests a day, some were repeated, while others were done only once. It seemed to me like they were dragging their feet, but for what reason?
When you are waiting for answers, treatment, and relief, you don’t want to wait long. At least I don’t! The longer it took, the slower it seemed they were. The slower they seemed, the angrier I become.
My most frustrating MG symptom is _____.