Preparing for a Myasthenic Crisis
A myasthenic crisis happens to about 1 in 5 people with myasthenia gravis (MG). It is a serious complication of MG that develops when the breathing muscles become weak. It may develop as a reaction to infection, stress, surgery, or after taking certain drugs. However, half the time there is no known trigger for a myasthenic crisis.1
Educating yourself and your loved ones about myasthenic crisis ahead of time can help you get care more quickly. Here are some steps to prepare for a myasthenic crisis.
Know your warning signs
Despite the word “crisis” being in the name, a myasthenic crisis does not always come on quickly. The shortness of breath or trouble breathing usually builds up over days. That is why it is important to recognize the early signs of a flare. If you get help quickly you may be able to avoid a full-blown crisis.
A myasthenic crisis may be developing if you feel short of breath and you:2
- Have a hard time lying flat in bed without feeling short of breath
- Are breathing very quickly (more than 20 breaths per minute)
- Pause in the middle of what you are saying to take a breath
- Have more slurred speech
- Have a weak cough or have trouble clearing mucus or saliva from your throat
- Have a harder than normal time chewing and swallowing
- Have trouble holding your neck up
- Feel much more weakness than normal in your arms or legs, plus are short of breath
- See the muscles between your ribs, neck, and stomach pull in during a breath
- Cannot count out loud past 20 in one breath
If you feel short of breath and also have any of the above symptoms, call your doctor or 911 right away.
However, some people with MG may feel short of breath because of anxiety, lung disease, or heart problems. Knowing your warning signs can help you and your doctor tell the difference between an MG flare or crisis and other conditions that can affect your breathing.
Prepare ahead of time
It can be helpful to prepare a few things ahead of time just in case you have a myasthenic flare or crisis. First, keep an updated packet of information with your important health details that includes:2
- Contact information for your neurologist and other doctors
- List of all your current drugs and supplements and the doses for each
- Health insurance information
- Information about any IV ports, pacemakers, and other implanted devices
- Your emergency contacts (friends or family)
- A list of drugs that can be dangerous to people with MG
- Your medical history and hospital records
Home pulse oximeter
It is not recommended that a person with MG use a pulse oximeter at home. A pulse oximeter is a device that measures oxygen levels in the blood. While a pulse oximeter can be helpful for home use with other conditions, it is not a good tool for people with myasthenia gravis.
A home pulse oximeter can give a false sense of security because blood oxygen levels may not drop until a person with MG is in serious danger. This stage of a myasthenic crisis is called respiratory failure, and it requires immediate, intensive care. The goal is to spot a flare or crisis early when less severe action is needed.
Getting emergency help
Local 911 services can be different from place to place. Some 911 centers let you register your medical information with them ahead of time. This can be helpful if you cannot speak during a myasthenic crisis. Other 911 centers allow you to text rather than call during an emergency. You can also make sure your local 911 center ties your phone number to your address by registering with them at State 911 Contacts.
You can help 911 find you more easily by:
- Making sure your house numbers are easy to see day and night
- Add a colorful or flashing light to stand out
- Add a lockbox to your door that lets paramedics get into your home
If possible, it can be helpful to go to the hospital with a friend or family member who can advocate for you. Since it is a rare disease, many doctors have no experience caring for someone with myasthenia gravis. This is why you or your loved one should ask for your regular neurologist to be included in decisions about your care.