Guest Voice: A strabismus diagnosis may have been my MG journey’s start

Note: This column describes the author’s own experiences with Mestinon (pyridostigmine bromide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I started noticing slight muscle weakness about six months before I began to seriously think that something might be wrong.

I went to different doctors, from a general practitioner to an endocrinologist, before going to a neurologist. In the meantime, my symptoms continued to progress to the point where I sometimes couldn’t even climb a small set of stairs. I’d stumble on the first step and be unable to lift my leg high enough to reach over it.

Around that time, I also started having double and blurred vision, which at first I didn’t think that much of because I’d had strabismus, which is an eye misalignment, since early childhood.

It’s been three years since I was diagnosed with myasthenia gravis (MG), but it only happened after my ocular symptoms became more pronounced. My neurologist told me I likely had MG after seeing me for just five minutes, but confirming that diagnosis proved to be much more of a challenge.

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Blood tests to check for the presence of the two main antibodies in MG, which target the acetylcholine receptor (AChR) and muscle-specific tyrosine kinase (MuSK) proteins, were negative. That may have been because of the type of testing I had, but it also might have been because I was early in the disease course, and no antibodies were yet detectable.

I wasn’t able to get tested for another possible culprit, the low-density lipoprotein receptor-related protein 4 (LRP4) antibody.

Aliya Askhatkyzy has had an eye misalignment since childhood, but an MG diagnosis led her to question what might have caused it. (Courtesy of Aliya Askhatkyzy)

I did get a neostigmine test, which measures muscle strength before and after neostigmine is administered. It was positive for MG, so after that, I had an electroneuromyography (ENMG) procedure, but only one type of nerve stimulation showed the dysfunction that indicates MG.

I started taking Mestinon (pyridostigmine bromide) and saw improvements, but I had to stop taking it after I developed cholinergic urticaria, a type of hives.

Around then, it was decided that I should repeat the antibody test, which was positive for AChR antibodies. A second ENMG also showed a slight nerve dysfunction.

MG presents itself differently based on a person’s age, gender, and even antibody type, so using a number of different diagnostic methods might sometimes be necessary. Sometimes a test might have to be repeated, or testing for the presence of LRP4 or other rare antibodies might be needed. In some places, a diagnosis might depend on whether levels are reported as titers or actual numbers.

I’ve started to think that maybe my strabismus could have been ocular MG that went unnoticed. Looking back, I’ve realized that once I started treatment for MG, my strabismus, which I couldn’t correct with a traditional ophthalmological approach, suddenly became controllable, specifically after I started prednisolone, a type of corticosteroid.

According to the Eye and Brain journal, 20%-60% of ocular MG patients develop generalized MG within about two years, some even when treated with corticosteroids. That’s why I think there should be more emphasis on neurological conditions in ophthalmology, as it might help MG patients get diagnosed earlier and possibly prevent or postpone generalized MG.

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Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.