Recently, a woman living with myasthenia gravis reached out to tell us how an MGFA emergency resource saved her life.
She was struggling to breathe and recognized it as an MG crisis. She called 911 for immediate help. When the EMTs arrived, she could not talk clearly to explain what was happening. But she had the MGFA’s “Emergency Management for Myasthenia Gravis” brochure for EMTs and medical professionals.
She provided this booklet to the emergency technicians, who used the information to appropriately assess her, provide initial breathing support via a non-invasive ventilator, and share her medical needs with the Emergency Department.
The patient shared that she felt this early, appropriate intervention helped her avoid intubation, which was less traumatizing for her and helped her recover from her crisis more easily.
Being ready for an MG emergency involves some preparation, but it’s an important part of your care plan.
Know the signs of an MG crisis. A myasthenic crisis occurs when the respiratory muscles get too weak to move enough air in and out of the lungs. You will be unable to breathe, and a machine (ventilator) will be used to help. The machine may do this through a tube into the airway (endotracheal intubation) or a tight-fitting mask on the face (BiPAP). Myasthenic crisis involves the respiratory muscles, so it is different from an MG flare (exacerbation).
MG flare or exacerbation describes a time when you have weakness in some or all the muscles in your body, but you do not need assistance to breath. MG flares vary from person to person but may include worsened double vision, slurred speech, increased arm weakness, falling, unsteady walking, and difficulty swallowing.
Many muscles throughout the body may weaken during an MG exacerbation, but myasthenic crisis refers specifically to severe, potentially life-threatening weakness of respiratory muscles. Myasthenic crisis typically develops after days to weeks of worsening symptoms. Rarely, MG crisis can develop more quickly. It is important to seek medical care immediately when symptoms of possible MG crisis are present.
Consider how to get medical help if you have trouble speaking. If you are in the United States, it’s always best to call 911 if you think you are in medical distress. But during an MG crisis, it may be hard to communicate what’s wrong. When you have difficulty drawing a breath or using your tongue and facial muscles, it will often impact your speech.
In some states, you can now text 911. This is one way to ensure an emergency call center gets your request for help, and you can share basic details about your condition.
You should also let friends, family, and coworkers know that difficulty beathing is a medical emergency. That way they can help if they see or hear you in distress.
Have an emergency pack ready. Put together a folder – hard copy and digital is best – with your key medical documents. Think of what you would want medical personnel to access if you weren’t able to speak for yourself (due to weakness or if you are intubated). This should include emergency resources about myasthenia gravis, a list of your medications, a list of medications contra-indicated for MG, insurance information, neurologist / specialist information, and emergency contact numbers.
Consider creating a “health resume” – a one-page document with your condensed medical history. Make sure to update this document if you change treatments, are hospitalized, or are diagnosed with any new illnesses or conditions.
Let trusted friends and family members know where to find this packet so they can assist you.
Your smartphone is a good way to carry basic medical information electronically, as you’ll always have needed resources with you. In addition, most phones have a feature that enables you to provide basic medical information and emergency contacts via the “Emergency” button at the bottom of the lock screen. Here is more information about how to do so. Note that all hospitals can access your phone without your permission; check with your local hospital’s compliance officer.
You can also carry a pocket-sized Emergency Card so you have the basics about MG on you at all times, or invest in a medical bracelet. Some people also carry emergency resource brochures in their car.
Here are some of the resources the MGFA recommends:
- MG Emergency Management for First Responders
- MG Emergency Management for Patients and Caregivers
- Emergency Alert Card
- Cautionary Drugs List (PDF or online)
- Find these resources in other languages
Planning for an emergency may not always lessen its impact, but it will provide you with some peace of mind that emergency personnel will know how to care for you should a crisis happen.