Emergency Room Experiences with Myasthenia Gravis are Traumatic
(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.
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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.
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Comments
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
Praying for you!
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.
Sandra
You have just described my experience in the ER! I was struggling so hard to breath. I couldn’t sit up or hold my head up and they are irritated I’m not speaking my phone number clear enough. I could hear people talking about my 02 sat and to some point ABGs looking pretty good. While all I could think was they are going to wait till I stop breathing before doing anything! Then I wondered if they would even notice if I stopped breathing.
M Carswell
I cried on reading this. I am terrified of A&E here in the UK, after repeatedly being told that my oxygen sats are normal and I need to see a psychiatrist.
Something has to change. I wonder how long it will be before the tides change and these rude A&E medics learn the same kindness they do for those with other more routinely seen conditions.
Patti Chambless
Thank you for this article. I was recently diagnosed with MG and felt like I was the only one having these symptoms. I too, have had the same ER visits being told I was having an “anxiety attack” and to “just take some deep breaths”. I went to the ER because I was unable to take deep breath’s. It indeed is very frustrating and scary when I am in crisis and afraid to go to ER feeling “I can take care of myself at home better than the doctors at ER”. My last 2 ER visits, I was admitted only to be treated for anxiety and a vital capacity test was never an option. I also was given IV Magnesium in the ambulance which caused me to go in to respiratory failure which meant my airway was now more constricted. Magnesium is on the contraindicated list but again, knowledge of MG would have played an important role. Since then, I have had several MG crisis and refused ER. I am sorry to hear that others have the same experiences with their disease and thankful you are putting it out there for others to know we are not alone. I know this is a rare disease and not many know how to treat something they are not familiar with. My recommendation is to step aside and allow someone to step in that is willing to listen to the patient who knows better than anyone, their own health. I wish you the best and thank you again for making me feel “I’m not alone “.
Kayla Dysard
This brought me to tears. I am 33 years old. I was living a normal happy life as a nurse and a mother of 5. One day I seen my life flash before my eyes while enjoying a nice evening ride with my family. I instantly was over taken by numbness and tingling that led to me be temporarily paralyzed and unable to breathe. I could mumble to my nine year old to call 911. Once they arrived they assumed I was having a panic attack and was intoxicated. They loaded me into the ambulance. On the ride to the hospital all the EMT could say or should I say yell at me was “calm your self down and breathe you are having a panic attack”. Inside my head I was yelling no this is not a panic attack, I already suffer from panic attacks. Not being able to breathe and move sent me into one!.
Once at the ER the nurses and er physician diagnosed me with a major panic attack and gave me liquid Valium. Little did they know they could have killed me with the dose they administered. After my body finally relaxed they sent me on my way even though I could not open my eyes or talk still.
As a nurse myself I told my fiancé to please take me to another hospital this is not a panic attack. I am very blessed he believed me and did just that. The next hospital er physician whom I knew immediately knew what I was experiencing and diagnosed me with Myasthenia Gravis. Finally I had answers to what had changed my life in an instant. I am now a month in of knowing I have Myasthenia Gravis. I am struggling with many symptoms that frightened me that I cannot fall asleep at night due to fear of choking or not being able to breathe. I am searching for support groups, knowledge anything that can help me be able to navigate this new life and still be the active mother and soon to be wife that I was before that dreadful evening.
Kathy
This is the exact experience we have had in the ED with my daughter, even as recently as yesterday. She is very newly picked up as as potentially having this ...Congneital Myasthenic Syndrome it’s looking. Gene testing pending.
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It’s Validating to read this. The Drs, even the head of dept, kept saying we are satisfied that she’s ok as her oxygen is 100% . She kept asking if it’s 100% why does my breathing feel so unsafe and dangerous? Her throat felt like it was closing and her diagphram heavy and not working. Very weak and shallow breathing. Weak across her whole, body. She is 14. Overnight I started researching myself...
Retha De Wet
Keep fighting for her. Your daughter is lucky to have a mom like you! I have a mom like you & that's why I can advocate for myself now, I learned from the best :)
Singoodness
I have to agree even here in USA we have same problem when going to er for years they put notes in my charts even not bothering to look on computer see my Heath issues even when told by my doctor to go to er get admitted lol seriously I would be in for hours before they call or notify the nuro team or failure in communication at times they have read notes in my chart often not do that dismiss me give me medicine that would make flare up Or crisses worst and I be back next day seriously my doctor would be upset waiting for call to come out er to see and get me admitted yeah so yeah times I could barely sit up stay awake barely breathe to make sentences like seriously holy hell I had few ports for having plasma exchange stuff they er treat me crazy I even heard people make jokes about guy who had attempted suicide in the other room I was so angry about it I told my doctors they were doing stuff like that I think people sometimes forget loose something when they deal with stuff in er some becom desensitized and forget that there are all sorts of reason why people are in there that they have no right to judge me or even somebody who try hurt themselves I love my doctors but yeah my experience have been crazy with er ya must self avocation or someone with you in case you cannot speak out up for yourself few time my friend had to stop them from trying to give me medicine I said I cannot take seriously holy hell yeah I was exhaustion sleep in ball other wake up to take Tylenol potassium and othe meds oh yeah seriously yeah it is like that they treat me like I was crazy oh I’m not crazy I been evaluated few time oh just so yeah know because people made me feel so crazy I question my self I found out I’d I’m emotional eater lol because I don’t like confrontation I stuff down my emotions lol oh that seriously why I wouldn’t go er unless my doctors tell me to go I don’t know about you but I wan live with mg not die from it
Suzanne Barthet
I'm in crisis but can't get help because of the very issue you are talking about. The ER won't listen or take me seriously and I'm between neurologists because they keep telling me I'm over their heads. I don't know what to do. I can hardly breathe, I feel like I'm drowning in my phlegm, and even though they told me my tests were all fine, when I looked, it shows my bottom lobes of both lungs are collapsed. I'm desperate for help. I watched my dad die this way and I'm scared. Anyone have any ideas?