This article is coauthored by Ratna Sanka, MD, neurologist, University of Texas Health, San Antonio, and Phil Cogan, MA, MGFA Board of Directors and Crisis Management Expert.
DISEASE & TREATMENT
Crisis 411: What You Need to Know About Myasthenic Crisis
MARCH 2022 | 5 MIN READ
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Do you know the signs of an MG crisis? You should.
A myasthenic crisis happens when worsening myasthenic weakness requires intubation or noninvasive ventilation to avoid intubation.1 In other words, you can’t breathe without a ventilator and need immediate medical help.1,2
Life eventually teaches us the importance of preparing for emergencies before they happen. But life with MG makes this lesson even more important. A myasthenic crisis needs to be handled properly and quickly.1-3 Check out the downloadable MG Crisis Kit Checklist and MG Crisis Card designed to assist with creating a kit to help you be prepared with input from Stephanie,* a person who lives with MG. Here’s what you need to know.
Put your health first. Having a myasthenic crisis kit ready to go is integral to taking care of yourself.
Stephanie
Living with MG
Red Alert: Signs You’re in Crisis
There are many reasons for shortness of breath that may have nothing to do with MG but may be equally troubling.4 However, any one of the following could signal you’re in MG crisis:
- In general, it feels harder to breathe.3,4
- You can’t complete sentences or count to 20 without getting out of breath.2-4
- The muscles between your ribs and above the collarbone cave in when you breathe.2,3
- Your cough can’t clear saliva or phlegm.3
If you are struggling to breathe, it is very important to call 911 immediately.
What Is an Impending MG Crisis?
Before a full-blown crisis, you may experience an impending crisis. This is a flare or exacerbation that could lead to a crisis in days or weeks. The signs vary by case and individual. Take any of them as an early warning—you’ll need closer monitoring at a hospital with aggressive treatment to prevent a full crisis.
Red Flags: Trouble with Chewing, Swallowing or Coughing
You might have a weak cough that is unable to clear your throat. You may cough frequently while eating and drinking. You could have trouble swallowing and need softer foods. Or you might get the sensation of liquids coming through your nose while swallowing.3
Other red flags are a drooping head, speech that's nasal or low volume, or needing to take a breath after every few words.2
If you experience any of these symptoms, you should go to a hospital immediately.
Yellow Flags: The Signs to Watch3,5
Although breathing, chewing, swallowing and coughing are the most troublesome signs of an impending crisis, there are many others that might be easier to miss, at least at first. These include any worsening of your MG symptoms, from double vision, eye drooping, slurred speech and arm weakness, to falling and trouble walking.
Regular appointments with your doctor and symptom tracking may help you notice these signs early.
Know the Triggers
To manage the risk of MG crises, you need to know what can cause one. The list of known MG crisis triggers includes2:
- Medications, such as high doses of steroids
- Certain antibiotics
- Some heart and blood pressure medications
- Agents used for anesthesia
- Magnesium
- Illness causing fever, pneumonia or other lung infections
- Stress from trauma or surgery
When to Call Your Neurologist. When to Dial 911.
What to do in a myasthenic crisis can get complicated. Be sure to talk with your neurologist regularly about your symptoms to help them know when things are getting out of hand.
Call Your Neurologist When You Experience3:
- Worsening of any MG symptoms
Go to the Hospital When You Experience3:
- Weak cough that is unable to clear your throat
- Coughing frequently while eating and drinking
- Trouble swallowing
- Sensation of liquids coming through your nose while swallowing
- Drooping head
- Speech that's nasal or low volume
- Needing to take a breath after every few words
Call 911 When You Experience:
- Difficulty breathing at rest3,4
- Inability to count to 20 in a single breath2-4
- The muscles between your ribs and above the collarbone caving in when you breathe2,3
- Feeling like you are drowning in your own saliva or phlegm3
Prep Others to Be Prepared
It’s important to prepare for a myasthenic crisis ahead of time. Be sure to discuss everything in detail with your neurologist, as every case of MG is different.
In the meantime, print, fill out and carry an MG Crisis Card with you at all times. The card lists important information for emergency medical services to know about if an MG crisis should occur, such as emergency contact information, medicines you’re currently taking, the signs of an MG crisis and more.
Taking time to think about and prepare a kit of items for a myasthenic crisis may help provide you and your loved ones with some steps for an action plan—and a bit of peace of mind.
You may want to share the checklist with your family, supporters and coworkers so that they’re familiar with items in your kit, including your current medications, including any MG treatment. Hopefully the day never comes, but it will feel good to know you have a plan in place.
References
- Sanders DB, et al. Neurology. 2016;87(4):419-425.
- Wendell LC, et al. Neurohospitalist. 2011;1(1):16-22.
- Stetefeld H, et al. Neurol Res Pract. 2019;1(19):1-6.
- Wahls SA. Am Fam Physician. 2012;86(2):173-180.
- Gilhus NE, et al. Lancet Neurol. 2015;14(10):1023-1036.
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*Paid contributor to MG United