The Start of the Mystery: From Fibromyalgia to Double Vision

I've had fibromyalgia since 1994, which often complicates things due to symptom overlap. However, my first suspected Myasthenia Gravis (MG) symptom appeared last July.

I bent over to pick up something I dropped, and when I stood up, I couldn't focus my eyes—I had double vision. I went straight to the emergency room, where tests ruled out a stroke. My general practitioner (GP) and optometrist followed up. The GP ruled out anything obvious, and the optometrist suspected a nerve palsy.

In October, I saw a neuro-ophthalmologist, who diagnosed me with esotropia (a form of strabismus) due to old age. I was so relieved he said it wasn't serious that I didn't even ask for the diagnosis at the time.

The Clues: Weakness and the drooping eyelid

I was sick with a bad respiratory infection through November and felt so weak I could hardly walk. Afterward, I commented to my doctor about the weakness and mentioned having trouble lifting things overhead. For example, putting a stack of plates into a cupboard seemed much harder than it should be. At the time, I attributed this to muscle wasting from old age, but it later felt significant.

When I got a copy of the neuro-ophthalmologist’s records in December, I researched the term "esotropia." Several things stood out, mainly that if my double vision was intermittent, worse at the end of the day, improved with rest, and varied minute to minute, it might actually be ocular MG. The articles all advised checking for MG with these symptoms, especially if the double vision changed depending on the direction of gaze—which mine does.

Another crucial clue was the recurrent left eyelid drooping (ptosis) during my respiratory illness, a symptom I had also experienced with COVID-19 in 2022. I later learned that ptosis combined with double vision is a strong indicator for MG testing. When the ptosis recurred in January, I became genuinely concerned.

Seeking a diagnosis: The positive AChR test

I made an appointment with my GP, shared my research, and he ordered the AChR antibody test, which came back REALLY positive at 9.87.

While I know the degree of positivity doesn't correlate with the severity of the illness, I assumed this confirmed at least ocular MG. My GP, whom I trust as an excellent diagnostician, is good at keeping me grounded. He advised that I might be getting ahead of myself, noting that other factors can cause a positive AChR result (and I've chosen not to research those for the sake of my anxiety).

His professional opinion is that I likely have ocular MG, but he believes the neck pain and arm weakness could be a combination of fibromyalgia and anxiety. He noted my neck seemed quite strong after a recent adjustment for chest wall pain, suggesting muscle tension could be the cause of the neck and arm symptoms.

Regardless, he referred me to a neurologist specializing in MG for a firm diagnosis, but I'm currently in limbo, waiting for them to call and schedule the appointment.

Waiting in limbo

I also have a follow-up appointment with the neuro-ophthalmologist in February. I called his office to update them on the drooping eyelid, the generalized muscle weakness, and the positive AChR test—all facts he didn't have in October. I don't blame him for not checking for MG initially; had I arrived with both double vision and a drooping eyelid, the story would have been different.

For now, I am waiting, nervous and frightened about the possibilities. While I know MG is rarely fatal, I fear the unknown. I hope to find encouragement and comfort from others who have already walked this road, and in time, I hope to give back to this community in kind.