Emergency Room Experiences with Myasthenia Gravis are Traumatic

The emergency room has never been a particularly amicable place. It is an assembly point for people in discomfort searching for assistance with varying degrees of medical problems, from broken bones to food poisoning. However, if you have a rare disease like myasthenia gravis (MG) or a complicated medical history, it often is not a place where you actually receive help.

I am always worried when my symptoms worsen to such an extent that I reluctantly have to make my way to the ER. I say reluctantly because if doctors and nurses are unfamiliar with your condition, they tend to dismiss most of your symptoms as an “overreaction.”

In several of my ER visits, the staff questioned my sobriety. I understand that my slurred words confuse some, but upon arrival, I am usually close to passing out from oxygen deprivation. The act of speaking is often too draining to even attempt.

I also haven’t met a drunk person who drools profusely.

I do not arrive at the ER looking glamorously fresh from a night of partying. Most times, I am in sweatpants because I have felt weak for a couple of days before it has escalated to the point of needing an ER visit. I do not go to an ER for interrogation. I go because I need medical attention.

Often, I find myself frantically worrying about the competency of medical professionals treating my “special case.” I have never entered an emergency room without the fear that clinicians will accidentally kill me with medications they did not know are contraindicated for MG or the therapies I use to treat it. This fear did not arise from my imagination. It arose from the experience of being prescribed a very clearly contraindicated antibiotic, which resulted in a hospitalization.

(Photo by Retha De Wet)

The thing about ER doctors is that many simply do not listen or they are intimidated by educated patients. Either way, they hardly ever treat an MG crisis appropriately from the start. One staff member told me to stand up and follow him when I had no control over my limbs and was lying like a rag doll on my bed. He was then annoyed when I managed to utter only a few unintelligible sounds in response to his request. I was the one who should have been annoyed.

The most infuriating response when entering an MG crisis without the ability to breathe properly is, “You are having an anxiety attack.” I suffer from an anxiety disorder, so I am very aware of the differences. An anxiety attack often leads to rapid breathing (hyperventilating), but with an MG flare, that would be impossible due to weakened muscles.

If someone comes to the ER with a diagnosis of a muscle disease that affects respiratory muscles, staff shouldn’t assume it is an anxiety attack without measuring the patient’s vital capacity. Oxygen saturation tests almost always will be normal, but vital capacity will not. The most annoying part is that I usually have someone with me to tell the staff this, but they often are too proud to listen.

I hope that one day the ER will be safe for people of all medical backgrounds, but right now that is not a reality. Thus, I always will make sure I have documents on my phone extending over several pages about the lists of medications contraindicated for MG. I will save documents on my phone directed at doctors on how to monitor breathing capacity during an MG crisis. I will continue to keep these documents on my phone with information about MG, hoping one day someone in the ER will swallow their pride and listen when I ask them to read it.

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