Emergency Room Experiences with Myasthenia Gravis are Traumatic

Retha De Wet avatar

by Retha De Wet |

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(Courtesy of Retha De Wet)

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.


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.


Desiree Townsend avatar

Desiree Townsend

"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."
Oh boy, is that not a true statement! Four years before I was diagnosed, I had surgery. In PACU after surgery, I felt like my chest was a few hundred pounds, and I couldn't breathe against the weight. When I mentioned to the nurse I couldn't breathe, she gave me a dirty look, and actually yelled at me saying my oxygen sat was fine, therefore I'm fine. It put me in tears. I agree with you that going to the ER is a scary, frustrating experience, and I've felt like they were looking at me as if I were crazy because I did know so much about a disease hey didn't know about. This article validated my own thoughts, feelings, and experiences. Thank you.

Lorna Penner avatar

Lorna Penner

Praying for you!

Katie Groves avatar

Katie Groves

This is a very good article and reflects what many of us experience in the ER. I do take exception to the sentence that rapid breathing (usually associated with a panic attack) is impossible in an MG respiratory flare. It is indeed possible and very common. Panting is a clear indication that the respiratory muscles are unable to expand fully due to weakness. It does cause hyperventilating which is why our high or normal oxygen rates are mistaken for normalcy. Panting can occur all the way to total failure and one of the indicators pointed out to me as a precursor. Everyone is different, but the article is correct that Vital Capacity should be measured immediately. Great information on carrying treatment protocol and medical history at all times.


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