Myasthenia gravis (MG) is unique because everyone’s experiences and symptoms are different. Symptoms can include eyelid droop, difficulty breathing, difficulty speaking and weakness in the arms and legs, to name just a few.¹ MG symptoms may vary from person to person, day to day and even hour to hour, and while MG can affect muscles throughout the body, here are some things you should know about MG-related breathing symptoms from the MG community and experts.^2,3

“People living with myasthenia gravis can look like there’s nothing wrong, except they may not feel that way,” says Aiden-Lee* who lives with MG. But breathing symptoms are serious and can even lead to an MG crisis.⁴ Aiden-Lee shares, “One time I got to the point where I could hardly talk or take a breath. People were asking me questions and I couldn’t answer.” He also adds, “And just a few weeks ago, I was cleaning, and I pushed myself too much and I ended up having to use my BiPAP (or bilevel positive airway pressure) device to help me breathe, because I was just doing way too much and overexerted myself.”

Rachel* who lives with MG shares, “I know my worst experience with breathing symptoms was back when I was in the early stages of my MG journey, before I had a clear diagnosis, when we were still trying to find the right treatment plan for me.”

And Nicola*, who also lives with MG, says, “I experience shortness of breath almost constantly; it is my most impactful symptom. I use a BiPAP ventilator every night to sleep and usually to catch my breath during the day.”

“Any dysfunction or weakness in the breathing muscles can increase your risk of sleep apnea. And, sleep apnea, when it's untreated may cause health risks,” says neurologist, Dr. Jon Durrani.* He continues, “Sleep apnea can cause sleep fragmentation which can make someone extraordinarily tired on top of the tiredness already caused by MG.”⁵ He recommends talking to your doctor if you have concerns about sleep apnea. “Living with untreated sleep apnea,” he says, “Just makes it even more difficult to compensate for the symptoms day to day.”

Tracking your symptoms and knowing your normal

There are some tools that you can put into practice that may help you track and manage your breathing symptoms. In fact, tracking your symptoms may help you and your healthcare team get a deeper understanding of MG’s impact on your life. The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is an eight-question survey that evaluates your MG symptoms. The questions are about daily activities, like breathing, brushing teeth and getting up out of a chair, and the last two questions are eye related.^1,6

To find your MG-ADL symptom score total, assess the result for each question and then add all eight scores together. The total score can range from zero to 24 points—in general, the lower the score, the less one’s daily activities may be impacted.⁶ A score of zero or one on the MG-ADL scale is considered minimal symptom expression (MSE).⁷ It’s important to remember that while MSE may be a good goal to strive for, it is not an end destination, and symptoms may change.⁸

The MG-ADL scale may be a helpful way to understand and explain breathing symptoms and their severity. On the MG-ADL scale, for the breathing category, the levels of severity can be gauged as follows:

• Score of 0: You experience no breathing issues
• Score of 1: You may experience shortness of breath with activity or exertion but you’re OK while at rest
• Score of 2: You experience shortness of breath while simply resting
• Score of 3: This is the level where symptoms are most severe, and an individual would require ventilator dependence

Knowing what’s normal for you—from symptoms to triggers—may help you recognize any changes in your “normal.” One option is to keep a journal where you can record your symptoms and how you feel, which may help you determine whether any changes come about in your day to day, during or after exercise, as your grow older, etc. If you notice changes, be sure to bring them to the attention of your healthcare team. Neurologist Dr. Charulatha Nagar* says, “MG-ADL scales are so important. Document your symptoms or any changes and bring it to your neurologist for your next visit.” Don’t know where to start? “Try using the scale at least once a week,” she suggests.

MG crisis: Know the potential symptoms and triggers

Breathing symptoms can be serious, so it’s important to know what to look out for. According to the Myasthenia Gravis Foundation of America MGFA, worsening breathing symptoms can lead to a myasthenic crisis. A crisis results from weakness of upper airway muscles which leads to struggling to breathe. In most cases, an MG crisis can be preceded by aggravated symptoms like trouble swallowing.^9,10

Around 15% to 20% of people living with MG experience at least one MG crisis in their lives.⁹ Therefore, it may be helpful to know what can cause an MG crisis to better manage the risk. Learning the potential symptoms and triggers to look out for when it comes to an MG crisis is important.

Common symptoms of a potential MG crisis may include^9,10:

• A cough that can’t clear saliva or phlegm or feeling like you are drowning in your own saliva or phlegm
• Coughing frequently while eating and drinking
• Sensation of liquids coming through your nose while swallowing
• Drooping head
• Speech that’s nasal or low volume
• Difficulty breathing while lying down
• Inability to count to 20 in a single breath

Common MG crisis triggers include^9,10:

• Physical and environmental stressors
• Infection
• Surgical intervention (thymectomy)
• Pregnancy
• Emotional stress
• Certain medications or change in medications

Speaking with your neurologist

Be sure to talk with your neurologist regularly about your symptoms so you can discuss the potential severity of your symptoms and what may be an emergency.

“Communicate with your healthcare team if there are any changes or worsening symptoms,” recommends Dr. Durrani.

Remember, any shortness of breath should be discussed with your doctor. And it’s important to note that there may be times when crisis symptoms are brought on more quickly, possibly due to a physical or environmental trigger. Weakness may develop within minutes to days, and it may feel difficult to breathe.⁹

Because MG symptoms can appear quickly, it may be helpful to have a plan in place for any emergencies. Aiden-Lee says, “I make sure my neurologist or primary care providers know if I’m going to the emergency room and that way they can also call the hospital before I arrive. I also make sure a loved one is alerted.”

Nicola agrees. “If I was going to the ER, I would immediately call my doctor and let him know and have him call ahead to the hospital.” Nicola also has a couple of items she makes sure she takes with her to the hospital. “I bring my BiPAP and its charging cable as well as any necessary documents,” Nicola says. “I also have my pulmonologist and respiratory therapist’s phone numbers ready to go just in case.”

Help others help you

The support of loved ones is valuable for those living with MG. “Having a support system to assist you with MG is vital, especially if you have breathing problems,” shares Nicola. “Having my partner take on small tasks for me daily really helps me conserve my energy, even just carrying my BiPAP device to the car or putting it onto my wheelchair is a great help.”

Your loved ones can also help you craft and play important roles in your emergency plan. “My husband and I have developed hand signals for emergencies,” says Rachel. “He knows the hand signals if I’m coughing and choking.” She goes on to say, “Just being in alignment with my family and making sure they all know who my doctor is, the phone number for my doctor, the emergency room I prefer to go to; so, I don’t have to direct and delegate during an emergency.”

Dr. Nagar says, “Hospital rooms may be equipped with what we call talking boards, which you can simply point to and pick out what you want to say.” She goes on to recommend, “It also may be helpful to strategize and prepare with family members ahead of time to determine, if you are in this situation, how you can communicate effectively.”

You may even want to prepare essential documents ahead of time so they’re easy to remember and your family members can grab them on the way out the door to the hospital. Rachel shares her practice, “I keep a journal with my MG-related notes in it—my medications, a list of contraindicated medications, my MG symptoms, allergies and dates of any scheduled treatments. If it’s in a journal, then all of my information is easy to grab and hand over at the hospital.”

Download the MG breathing symptoms discussion guide for tips from the MG community and insights from a respiratory therapist living with MG. And remember, as every case of MG is different, be sure to discuss everything in detail with your neurologist.