Long Journey to Diagnosis

Last updated: February 2023

I am an 80-year-old woman who wasn’t diagnosed with MG until I was almost 75.

I have had symptoms of the disease since I was an older teenager, but no one ever diagnosed my problems. All my life I have had problems with my eyes, trouble focusing, double vision problems, choking and swallowing when I eat, and problems with my balance. My eyes even got so bad about 15 years ago that I couldn’t keep them open, and my eye doctor did surgery on my eyelids to help me see.

Yet no one still diagnosed me with MG. I even had to go to the hospital one time because I couldn’t breathe, I believe I was having an MG crisis. I just couldn’t get any air in and out of my lungs. They started treating me for heart failure, and COPD and the nebulizer solution respiratory therapy used had medication in it that actually made my MG worse.

Finally, five years ago, my primary care doctor sent me to see a neurologist, and within 10 minutes, he diagnosed me with MG. I am currently taking Mestinon and prednisone, and have been advised to start taking CellCept. The jury’s still out on whether I will start taking that drug. I’d love to hear from other MG patients who take CellCept.

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