Myasthenia Gravis Misunderstood - Identifying the historical misinterpretations, miscommunication, and misconceptions

Abstract

Myasthenia Gravis (MG) is a serious disease and can present clinically with very severe symptoms in many patients; however, the fluctuating severity of MG results in the disease being commonly misdiagnosed as other conditions, including conversion disorder. The earliest recorded literature on MG provides evidence of the variability of signs and  symptoms, including many patients who appeared to have mild symptoms initially but died suddenly and unexpectedly from MG. Often, these patients were initially believed to be suffering from hysteria.

This review analyzes some of the most prominent MG literature still cited today. It found that many communication errors have led to today’s misunderstandings and have continued to cause difficulties in diagnosis and difficulty in understanding the MG patients’ lived experiences. These  errors include the intended meaning for ‘gravis’ being misinterpreted as ‘severe’ instead of the intended meaning of ‘a painful weight in the limbs’, the false belief that ‘gravis’ is Latin for ‘grave’ and how the miscommunication of the early 1900’s MG autopsy studies added to this confusion,  where MG continued to be referred to as a ‘grave’ condition. The continued omission of the sensory symptoms associated with MG from the literature has also been miscommunicated for decades, however such symptoms are now becoming recognized as a result of increasing patient led research.

Myasthenia Gravis should continue to be regarded as a serious disease, due to the devastating effect on quality of life for many people, and the unpredictability of the myasthenic crisis potentially occurring in all people living with MG, including those who are undiagnosed. The dismissing of mild symptoms results in many MG patients remaining undiagnosed. The possibility that individuals in this group go on to become victims of Sudden Adult Unexplained Death (SUD) is yet to be investigated, and there is a need for research in this area.

Miscommunication also includes omitting ‘old knowledge,’ not listening to the patient’s lived experience, and failing to integrate relevant interdisciplinary knowledge. Good  examples of these are The Mary Walker Effect, and combining patient lived experience with ocular anatomy and physiology knowledge to develop new MG-specific ocular motility clinical tests. A new test is presented for evaluating MG eye signs utilizing knowledge of the ‘Safety Factor,’ and is referred to as The SLOWLY Test (Significant Level Of Weakness, Loci in Y Axis).

Awareness of the historical misinterpretations, miscommunications, and misconceptions is crucial to preventing delay in diagnosis in MG patients, developing new clinical tests, rehabilitation interventions, and helping doctors and others understand the lived experience of MG patients.