The Diagnostic Mystery: Unraveling MG, Guillain-Barré, and the Role of Stress

I am a 53-year-old woman who has always been highly active and very healthy, never having been hospitalized or requiring daily medication. In March 2024, my health suddenly declined with overwhelming weakness, fatigue, and severe bladder symptoms. I was getting up every hour through the night due to horrible urgency.

After seeing my primary doctor and while awaiting blood work results, I went to the ER because I was too weak to get out of bed. I was also experiencing tingling and numbness in my hands and feet, mostly at night.

The Myasthenia Gravis Workup

While I was triaged at the ER, a nurse immediately noticed something I hadn't: my eye was drooping (ptosis). When he showed me in a mirror, I confirmed the eyelid droop was new.

I was worked up by a neurologist with a chest CT, brain MRI, X-rays, and blood tests. Though imaging was unremarkable, the neurologist suspected Myasthenia Gravis (MG). The ice cube test showed improvement, leading to my admission and the start of Pyridostigmine. I felt better within 20 minutes and could feel the symptoms returning as the next dose time approached. I was sent home with a differential diagnosis of MG.

Diagnostic Confusion and Self-Testing

During a follow-up, my primary doctor confirmed my blood work was negative for MG antibodies but correctly noted that approximately 20% of MG patients are seronegative. Given that the medication was working, he advised me to continue taking it.

My insurance then changed, and a new doctor reviewed my records a couple of months later. This second doctor disagreed with the MG diagnosis, suggesting Guillain-Barré syndrome instead. He gave me the choice to stop the medication or continue. Thinking it was pointless to take medication for a condition I might not have, I stopped.

I felt fine for two and a half months until I had a flare-up following a period of extreme stress. I restarted the medication, but it worked much more slowly this time. After a month, I stopped again and felt fine for another two months, until a second period of extreme stress triggered the symptoms yet again.

Current State and Uncertainty

This is where I am today: I have restarted the medication, and it seems to be working even more slowly than before.

I am deeply confused. I was unconvinced about the MG diagnosis after the second doctor’s opinion, but these clear, recurrent flare-ups following stress indicate an underlying cause. While I do not have facial symptoms, swallowing or breathing issues, or double vision/eye problems (other than the initial ptosis), could this still be MG? I am looking for input and clarity.