Living with myasthenia gravis

Myasthenia gravis (MG) is an autoimmune neuromuscular disease characterized by muscle weakness and fatigue. The more the affected muscles are used in daily activities, the weaker they become until a person rests again. This means that simple tasks like keeping your eyes open or holding the head erect can become challenging by day’s end.

The symptoms of MG can be highly variable, and no two people experience the disease exactly in the same way. The most common symptoms include droopy eyelids, blurred vision, slurred speech, and weakness in the arms and legs. Basic functions that many take for granted — like chewing, swallowing, and walking — may become difficult. Managing these symptoms is challenging and patients may need to adapt to a new way of life.

Although MG cannot be cured, existing therapies can help to control and alleviate disease symptoms in most patients. Many patients respond well to treatment, and with the support of family and friends, it is possible to maintain a good quality of life.

Eating and drinking

The impact of MG on swallowing can occur either gradually or suddenly. Swallowing muscles may become fatigued, particularly toward the end of a meal or when eating foods that require considerable chewing.

Managing such difficulties depends on the person and on the underlying cause and severity of the swallowing problem. In addition to drug therapy, smaller meals taken several times during the day can help to reduce fatigue, as can meals with softer solids. Resting prior to eating and avoiding talking while eating is also advised.  Eating the largest meal of the day earlier in the day, when the patient has more energy, may be of help.

Other strategies to cope with swallowing problems include:

  • avoiding hot foods or warm liquids that can relax the throat muscles
  • alternating a small bite of solid food with a small sip of a liquid
  • drinking thicker liquids, which may be safer to swallow than thinner ones
  • crushing a medication or placing it in pudding or applesauce

Speech and communication

Muscles used for breathing and those of the mouth, throat, and neck may be affected in MG patients, leading to difficulties in speaking. These issues can affect employment or job performance, and in being understood or heard while speaking, causing a person to feel socially isolated.

Medications used for MG symptoms typically address this disability, but the help of a speech and language pathologist may also be needed. Muscle-strengthening exercises and approaches that might compensate for verbal communication can also be of help.

Vision problems

Most people with MG experience vision problems, typically double vision, droopy eyelids, or both. Double vision results when the eyes fail to move together in balanced alignment, causing the patient to see “double” images. One or both eyelids may droop to cover all or part of the eye’s pupil, obstructing vision.

Besides medications, ways to address vision problems include:

  • wearing dark glasses in bright light, which some patients find helpful
  • using eyelid tape, a special tape that holds the eyelids open without injuring them (or silk tape used at hospitals)
  • applying a patch to one eye, allowing patients with double vision to see only one image. But if the same eye is consistently patched, vision in that eye will diminish. It is important to alternate the eye on which the patch is placed to avoid permanent vision loss.

Exercise

Exercise may seem disadvantageous to people with MG due to fatigue, and some may worry that it could exacerbate disease symptoms. However, evidence suggests that exercise may aid their physical health, especially for those with milder disease, and might ease fatigue.

A well-planned exercise program can help patients maintain muscle strength and overall endurance, allowing them to carry out basic tasks with greater ease.

Conserving energy

Avoiding excessive expenditures of energy throughout the day is essential to minimizing the effects of muscle weakness. Some tips for conserving energy include:

  • getting help with daily tasks
  • using a neck brace and eye tape, and resting the eyes if reading or doing computer work
  • napping when needed, and sitting down whenever possible
  • minimizing long-distance travel
  • using a chair lift for house stairs and a lightweight cane for walking
  • putting grab bars in the shower and bath

Emotional and mental well-being

Many MG patients may feel isolated, or worry about losing contact and self-identity. Some have had to give up their careers, and may feel like a burden to their families both financially and socially. Finding distance travel, or even a quick trip to the grocery store, increasingly difficult can further compound feelings of isolation.

Maintaining a good support network and being open with family, friends, and colleagues about the disease can help with managing life with MG. Many support groups in both the U.S. and the U.K. bring people together with others dealing with many of the same challenges.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.