What have you been told about myasthenia gravis (MG) since you or your loved one was first diagnosed? Since it’s a rare disease — only around 100,000 to 120,000 people in the U.S. have been diagnosed with MG — many people haven’t heard of it at all. Even among those who know what MG is, there are many misconceptions and ideas based on older research that have been disproven in recent years.

If you’re living with MG, it’s important to get expert and up-to-date information to manage your condition and feel your best. MGteam spoke with Dr. Sami Saba, a neurologist and neuromuscular specialist in New York City, about common misconceptions people have about MG.

Misconception 1: MG Symptoms Become Severe Suddenly

“One of the most common misconceptions about myasthenia gravis is that it can very rapidly lead to a loss of the ability to move and the ability to breathe, leading someone to need to be on a ventilator in the hospital,” said Dr. Saba. “There are warning signs that you can look out for when myasthenia gravis is getting worse, and if you address the worsening disease in time, then you can avoid hospitalization.”

“While emergency hospitalizations can happen, the rate of decline is not that rapid,” he continued. “In almost all instances, the person with myasthenia gravis can notice the warning signs of worsening disease and address them with their team of physicians and other care providers in a timely manner, long before they require mechanical ventilation.”

Signs To Watch For

“Number one, trouble breathing is a concerning warning sign that MG is getting worse,” explained Dr. Saba. “It may be an indicator that a change in treatment is necessary, or that that person needs to be in the hospital for monitoring, in case they continue to get worse.”

“Another warning sign would be trouble swallowing,” he went on. “Many patients with MG have some difficulty in swallowing, but most of the time it’s fatigue with chewing, as opposed to difficulty actually getting the food down your throat. That’s a more concerning symptom.”

“Lastly, any difficulty in holding your head up is a warning sign that MG is getting worse and may need a change in treatment or monitoring in the hospital.”

Misconception 2: Many Medications Are Dangerous With MG

“Another misconception is that people with myasthenia gravis have to avoid many different kinds of medications, because those medications can make them worse,” said Dr. Saba. “While it’s true there are medications that could potentially make myasthenia gravis worse, it’s a relatively small number of medications.”

“As long as the person with myasthenia gravis discusses any new medication with their doctor, it can easily be managed,” he said. “Certain medications can be avoided. Other medications can be used with caution, with a higher level of monitoring for any worsening symptoms. Most people with myasthenia are able to take medications for other diseases without any issues.”

Misconception 3: People With MG Should Avoid Exercise

“Another misconception about myasthenia gravis is that people with the condition are not supposed to exercise,” said Dr. Saba. “While it’s true that repeated movements can make the weakness of myasthenia worse, exercise in general is actually good. It helps to strengthen the muscles and improve quality of life in the long run.”

Dr. Saba noted that exercise can help to reduce fatigability — getting tired easily — and improve quality of life in the long run. “People with myasthenia just have to be more careful about how they exercise,” he said.

Tips for Exercising Carefully With MG

Dr. Saba recommended the following when engaging in physical activity:

• Use low weight when doing any weight training.
• Perform fewer repetitions.
• Take frequent breaks.

Read more about safe ways to exercise with MG.

Find Your Team

MGteam is the social network for people living with myasthenia gravis and their loved ones. Members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

What misconceptions about MG have you encountered? Share your experience in the comments below, or start a conversation by posting on your Activities page.