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, Mathematics, and History/Social Science. I also held a variety of support and administrative positions at the K–12 level. After retiring, I worked for several more years at a local university coaching new school administrators.

I retired early to care for my late mother while she underwent dialysis. Tragically, she died from stroke complications 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, blurry vision, and hands that felt as weak and unsteady as jellyfish. An initial blood test did not confirm MG and led to an erroneous eye-stroke diagnosis.

What Is Myasthenia Gravis?

Myasthenia gravis is a rare, chronic autoimmune disease. The immune system mistakenly blocks the communication between the nerves and the muscles. As a result, muscles become weak and tire easily with repeated use.

MG can affect the muscles that control:

• Eye movement, causing double vision or drooping eyelids or even blurry vision
• Facial expression, speaking, chewing, swallowing, and breathing
• Arms and legs

One key feature of MG is that weakness can fluctuate. A person may feel stronger after resting especially in the morning hours and weaker later in the day or after physical activities. Symptoms can also flare-up or worsen temporarily and then improve. MG is not contagious, and is not due to lack of effort, aging, or poor motivation. It is a medical condition that can affect anyone, even 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, and other evaluations. Some people with MG do not have detectable antibodies on the first round of testing like mine. Because of its rarity, most doctors and medical personnel do not recognize MG symptoms right away. myasthenia.org

My Experience After Retirement

For me, the symptoms were confusing. Wobbly legs, double vision, droopy eyelids, sensitivity to light, blurry vision, and weak hands could have been attributed to aging, stress, vision problems, or another neurological condition. As in my case, a hand nerve test led to a carpal tunnel diagnosis.

Like many, I thought retirement will give me the time to do all the things I had put off like travel, family time, and relaxation. Living with MG changed all that. Tasks that once seemed routine—walking, climbing stairs, reading, cooking, driving, or participating in family activities—may now require planning, pacing, and rest, recharging my body like a battery.

The disease can also affect emotional well-being and, though controversial, may explain a foggy brain and memory gaps. A person may feel frustrated when others cannot see (why many call MG an invisible disease!) 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 process information, remember things, speak, see, walk, chew, swallow, or maintain energy.

Learning to listen to my body has become essential. Rest is not laziness but is a way to conserve my energy, as my neurologist told me early on. 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. MG is a snowflake disease. No two MG-ers manifest in the disease exactly the same way.

Treatment approaches may include:

Medication (like Pyridostigmine or the brand name Mestinon) that can temporarily improve communication between nerves and muscles and may reduce weakness but does not treat the underlying autoimmune cause (like a bandage) and/or steroids (such as Prednisone) and other immune-suppressing medicines (like azathioprine, mycophenolate mofetil and others) that may reduce the immune system’s attack on the neuromuscular junction.  

Targeted therapies are much newer treatments that work on specific parts of the immune system with such options as B-cell treatments, neonatal Fc receptor—or FcRn—blockers, and complement inhibitors, and for how they work visit the Myasthenia Gravis Foundation of America (MGFA) web site where Vyvgart, Vyvgart Hytrulo, Rystiggo, IMAAVY, Soliris, Ultomiris, Zilbrysq, and Uplizna are explained in detail. myasthenia.org

Intravenous immunoglobulin, or IVIg infusions using antibodies collected from donated plasma to temporarily change one's immune response and done when symptoms worsen, when a rapid improvement is needed, or while a longer-term treatment begins to work.

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

Thymectomy or surgery to remove the thymus gland when a person has a thymoma, or tumor of the thymus but 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. Though not often, this can become a myasthenic crisis, a life-threatening emergency.

I carry an updated medication list, emergency contact information, and a medical identification card or bracelet. Caregivers and trusted others 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 unpredictability 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 and request educational materials in the patient’s preferred language and include trusted family members in appointments, with the patient’s permission.
• Discuss traditional medicines, supplements, and herbal remedies openly with the neurologist and pharmacist and 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, and joining support groups, including virtual groups (visit the MGFA web site for more information).
• Encourage family members to learn the warning signs of swallowing and breathing problems and 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 and searching for specialists
• Support groups, community connections, patient packets and educational material, research and clinical-trial information, MGFA MG Walks and community events, and emergency-management education for patients, caregivers, first responders, and healthcare professionals
• MGFA Helpline: 1-833-647-8764

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 and giving myself GRACE or compassion and kindness.

Living with an incurable disease does not mean that life has stopped. It means learning and accepting new limits, finding a new purpose, engaging in activities that keep you hopeful, accepting help when necessary, planning carefully, and recognizing progress even incrementally. 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. MG is only a diagnosis. It does not define me.

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.