Living With a Rare, Incurable but Manageable Autoimmune Disease: Myasthenia Gravis in Retirement

By Erick Mata, Retired Educator

Who would have thought that, after retiring early at age 54 following more than 32 years in education, I would spend my retirement living with myasthenia gravis, commonly called MG?

My career included working as a teaching assistant and teaching English, English as a Second Language, mathematics, history, and social science. I also held a variety of administrative positions at the K–12 level. After retiring, I worked for several more years at a local university.

I retired early to care for my late mother while she underwent dialysis. Tragically, she died of a stroke six months after my retirement, during the COVID-19 lockdown, the day after Christmas in 2020.

My own MG diagnosis came in the summer of 2025, after nearly a year of symptoms that included wobbly legs, double vision, sensitivity to light, and hands that felt as weak and unsteady as jellyfish. An initial blood test did not confirm MG, which made the diagnosis more difficult and delayed answers.

What Is Myasthenia Gravis?

Myasthenia gravis is a rare, chronic autoimmune disease. In simple terms, the immune system mistakenly interferes with the communication between the nerves and the muscles. As a result, muscles become weak and tire easily, especially after repeated use.

MG can affect the muscles that control:

• Eye movement, causing double vision or drooping eyelids
• Facial expression and speech
• Chewing and swallowing
• The arms and legs
• Breathing

One important feature of MG is that weakness can fluctuate. A person may feel stronger after resting and weaker later in the day or after physical activity. Symptoms can also worsen temporarily during an exacerbation, or flare-up, and improve during periods of remission. MG is not contagious, and it is not caused by a lack of effort, aging, or poor motivation. It is a medical condition that can affect anyone, including people who have been active and healthy throughout their lives.

A negative blood test does not always rule out MG. Doctors may use a combination of symptom history, neurological examination, antibody blood tests, nerve tests such as repetitive nerve stimulation or single-fiber EMG, and other evaluations. Some people with MG do not have detectable antibodies on the first round of testing. myasthenia.org

My Experience After Retirement

For me, the symptoms were confusing. Wobbly legs, double vision, sensitivity to light, and weak hands could have been attributed to aging, stress, vision problems, or another neurological condition. Because MG symptoms can come and go, it may take time to recognize a pattern.

Retirement is often imagined as a period of freedom, travel, family time, and relaxation. Living with MG can change those expectations. Tasks that once seemed routine—walking, climbing stairs, reading, cooking, driving, or participating in family activities—may require planning, pacing, and rest.

The disease can also affect emotional well-being. A person may feel frustrated when others cannot see the weakness or do not understand why plans must change. Family members and friends may think someone looks fine while that person is struggling to speak, see, walk, chew, swallow, or maintain energy.

Learning to listen to my body has become essential. Rest is not laziness. Conserving energy is not giving up. Adjusting expectations is part of managing a chronic illness.

Current Treatments for MG

There is currently no guaranteed cure for MG, but it is treatable and manageable. Treatment depends on the person’s symptoms, age, general health, antibody status, the muscles affected, and whether the disease is primarily ocular or generalized. A neurologist—ideally one familiar with neuromuscular diseases—can help develop an individualized plan.

Common treatment approaches include:

Pyridostigmine. This medication, commonly known by the brand name Mestinon, can temporarily improve communication between nerves and muscles and may reduce weakness. It does not treat the underlying autoimmune cause.

Steroids and other immune-suppressing medicines. Prednisone and medicines such as azathioprine, mycophenolate mofetil, cyclosporine, or tacrolimus may reduce the immune system’s attack on the neuromuscular junction. These medicines require medical monitoring because they can have significant side effects.

Targeted therapies. Newer treatments work on specific parts of the immune system. Depending on the person’s antibody type and diagnosis, options may include B-cell treatments, neonatal Fc receptor—or FcRn—blockers, and complement inhibitors. Examples listed by the MGFA include Vyvgart, Vyvgart Hytrulo, Rystiggo, IMAAVY, Soliris, Ultomiris, Zilbrysq, and Uplizna. Availability, eligibility, insurance coverage, and treatment schedules vary. myasthenia.org

Intravenous immunoglobulin, or IVIg. IVIg uses antibodies collected from donated plasma to temporarily modify the immune response. It may be used when symptoms worsen, when a rapid improvement is needed, or while a longer-term treatment begins to work.

Plasma exchange. Also called plasmapheresis, this procedure removes harmful antibodies from the blood. It can provide relatively rapid but temporary improvement and may be used during serious worsening, before surgery, or when other treatments are not working.

Thymectomy. This is surgery to remove the thymus gland. It is strongly recommended when a person has a thymoma, or tumor of the thymus. It may also benefit some people with generalized, acetylcholine-receptor-antibody-positive MG, even when no tumor is present. Improvement may take time and is not guaranteed.

Treatments should never be started, stopped, or changed without speaking with the treating physician. People with MG should also tell every healthcare professional that they have MG because some medications, infections, surgery, and other stresses can worsen weakness.

Recognizing an Emergency

Severe worsening of MG can affect the muscles needed for breathing or swallowing. Difficulty breathing, rapidly worsening weakness, choking, inability to swallow, or severe trouble speaking requires immediate medical attention. This can become a myasthenic crisis, a life-threatening emergency.

People with MG may benefit from carrying an updated medication list, emergency contact information, and a medical identification card or bracelet. Caregivers should know the person’s neurologist, medications, emergency plan, and usual warning signs.

MG in Filipino and Filipino American Communities

For Filipino and Filipino American families, MG may affect more than the individual patient. Filipino families often place strong value on family caregiving, close intergenerational relationships, faith, and collective decision-making. These strengths can provide valuable support, but family members may also need education about the unpredictable nature of MG.

A person with MG may look healthy while experiencing serious fatigue or weakness. Relatives should understand that canceling an event, resting during a family gathering, eating slowly, or needing help with transportation is not a lack of respect or commitment. It is part of managing the disease.

Several practical steps may help:

• Ask the healthcare team for a professional medical interpreter when needed rather than relying only on children or relatives.
• Request educational materials in the patient’s preferred language.
• Include trusted family members in appointments, with the patient’s permission.
• Discuss traditional medicines, supplements, and herbal remedies openly with the neurologist and pharmacist.
• Ask about medication costs, prior authorization, transportation, infusion locations, and financial-assistance programs.
• Connect with other Filipino or Asian American patients when possible, while remembering that MG affects each person differently.
• Encourage family members to learn the warning signs of swallowing and breathing problems.
• Create a plan for family celebrations, church activities, travel, and caregiving that allows for rest and flexibility.

For Filipino Americans, navigating health insurance and specialist care can be especially challenging. A primary-care physician can help coordinate referrals to a neurologist or neuromuscular specialist. Patients should keep copies of test results, medication lists, imaging reports, and treatment records and bring them to new appointments.

Finding Support

The Myasthenia Gravis Foundation of America (MGFA) offers education, support, advocacy, research information, and connections for people with MG and their caregivers. Helpful MGFA resources include:

• MGFA website: https://myasthenia.org/
• Understanding MG: https://myasthenia.org/understanding-mg/overview-mg/
• MGFA treatment information: https://myasthenia.org/myasthenia-gravis-treatments/
• Newly diagnosed resources and patient information
• Support groups and community connections
• Doctor and specialist search tools
• Patient packets and educational materials
• Research and clinical-trial information
• MGFA Helpline: 1-833-647-8764
• MGFA MG Walks and community events
• Emergency-management education for patients, caregivers, first responders, and healthcare professionals

The MGFA also maintains information about current and emerging treatments. Because treatment approvals and recommendations can change, patients should discuss the most appropriate options with their neurologist and consult the most current MGFA materials.

Moving Forward

Myasthenia gravis has changed the way I understand retirement, health, independence, and family. I still have difficult days, but I am learning that managing MG is a process of adapting rather than surrendering.

Living with an incurable disease does not mean that life has stopped. It means learning new limits, accepting help when necessary, planning carefully, and recognizing progress in smaller ways. With appropriate medical care, support from family and community, and reliable information, many people with MG can continue to live meaningful and active lives.

My hope is that sharing my experience will help others recognize the symptoms of MG, seek medical attention, ask questions, and understand that they are not alone.

This article is for education and personal reflection and is not a substitute for diagnosis or medical advice. Treatment decisions should be made with a qualified healthcare professional.