Living With a Rare, Incurable But Manageable Autoimmune Disease: Myasthenia Gravis in Retirement
By Erick Mata, Retired Educator
Personal Journey With MG
Who would have thought that, after retiring early at age 54 following more than 32 years in education, I would spend retirement living with myasthenia gravis, commonly called MG?
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. These included wobbly legs, double and blurry vision, light sensitivity, drooping eyelids, and hands that felt weak and shaky like jellyfish.
An initial blood test did not confirm MG and led to an incorrect eye-stroke diagnosis. I also quit my university job, followed by weeks of nervous breakdowns, anxiety attacks, insomnia, and other challenges that MG may have triggered.
My career included working as a teaching assistant; teaching high school English, junior high English as a Second Language, math, and history/social science; and holding various support and administrative positions in K–12 schools and district offices. After retiring, I worked for several more years at a local university coaching new school administrators.
What Is MG?
MG is a rare, chronic autoimmune disease. The immune system disrupts communication between nerves and muscles, causing muscles to weaken and tire with repeated use.
Think of muscles as locks, nerve signals as keys, and antibodies made by the body as gum. The gum blocks the locks, making it difficult for the keys to get in. As a result, muscles do not work correctly and tire quickly.
MG can affect the eyes, face, arms, and legs, as well as the muscles used for speaking, chewing, swallowing, and breathing. Weakness often changes throughout the day. Rest may help, while activity can worsen symptoms.
MG is not contagious, and it is not caused by aging or lack of effort. It can affect people who carefully manage their health and exercise regularly.
A negative blood test does not always rule out MG. Diagnosis may involve reviewing symptoms, a neurological examination, blood tests, nerve tests, and other evaluations. Some people do not have detectable antibodies on their first test, as was the case with me. Because MG is rare, its symptoms may not be recognized right away.
Treatment
Treatments may include:
- Pyridostigmine (Mestinon): May temporarily ease weakness but does not address the autoimmune cause.
- Steroids and immune-suppressing medicines: Prednisone and other medicines may reduce immune-system activity.
- Targeted treatments: Newer medicines act on specific parts of the immune system. Options may include Vyvgart, Vyvgart Hytrulo, Rystiggo, IMAAVY, Soliris, Ultomiris, Zilbrysq, and Uplizna.
- IVIg: An infusion of antibodies from donated plasma that can temporarily change the immune response. It may be used when symptoms worsen or faster improvement is needed.
- Plasma exchange: A procedure that removes harmful antibodies from the blood. It can help relatively quickly, although the benefit is temporary.
- Thymectomy: Surgery to remove the thymus gland, sometimes recommended when a person has a tumor there. Improvement may take time and is not guaranteed.
Never start, stop, or change treatment without speaking with your doctor.
Recognizing an Emergency
In rare cases, MG may worsen and affect the muscles that control breathing and swallowing. This can lead to difficulty breathing, swallowing, or speaking and requires immediate medical attention.
A myasthenic crisis is a life-threatening emergency. Seek immediate medical help for:
- Difficulty breathing
- Rapidly worsening weakness
- Choking or inability to swallow
- Severe trouble speaking
I carry an updated medication list, emergency contact information, and a medical identification card or bracelet. Caregivers and trusted people should know the patient’s neurologist, medications, emergency plan, and usual warning signs.
MG in Filipino and Filipino American Communities
Ask for a professional medical interpreter and materials in the patient’s preferred language. With the patient’s permission, include trusted family members in appointments.
Discuss traditional medicines, supplements, and herbal remedies with the neurologist and pharmacist. Ask about costs, insurance approval, transportation, infusion locations, and financial assistance.
Connect with Filipino, Asian American, and other support groups, including online communities. MG affects everyone differently, so another person’s experience may not match yours.
Teach family members the warning signs of breathing and swallowing problems. Plan family gatherings, church activities, travel, and caregiving with flexibility and time for rest.
Practical Management and Advice
For me, the symptoms were confusing. Wobbly legs, double vision, light sensitivity, blurry vision, and weak hands could have been attributed to aging, stress, vision problems, or another neurological condition.
In my case, a hand nerve test led to a carpal tunnel syndrome diagnosis in only my right hand. My question was, “How come both hands could not grab objects?” Because MG symptoms fluctuate and are not commonly recognized, it may take time to receive an accurate diagnosis.
Like many retirees, I thought retirement would give me time for travel, family, and rest. MG changed those plans. Walking, climbing stairs, reading, cooking, driving, and joining family activities can now require planning, pacing, and periods of rest throughout the day, much like charging a battery.
MG can also affect emotional well-being. Brain fog and memory gaps are often reported, although doctors still debate their connection to MG. Since MG is hard to see, others may not understand why plans change or why someone who looks fine is struggling to think clearly, remember, speak, see, walk, chew, swallow, or maintain energy.
I have learned to listen to my body. As my neurologist told me early on, “MG is all about conserving energy.” Adjusting my expectations is part of managing a chronic illness.
No cure for MG exists so far, but it can be treated and managed. Treatment depends on a person’s symptoms, overall health, test results, and which muscles are affected. A neurologist, ideally one experienced with muscle and nerve disorders, can help create an individual plan.
MG is often called a “snowflake disease” because it affects everyone differently.
Helpful steps include:
- Tell every healthcare professional that you have MG, since some medicines, infections, surgeries, and other stresses can worsen weakness.
- Keep copies of test results, medication lists, imaging reports, treatment records, and Activity for Daily Living (ADL) scores.
- Ask a primary-care physician for a referral to a neurologist or MG specialist if needed.
- Plan daily activities with flexibility, pacing, and rest.
- Accept help with driving, errands, or long-distance travel when symptoms flare.
- Discuss current treatment options with your neurologist.
MG can affect the whole family. Filipino families’ intergenerational relationships, caregiving traditions, faith, and collective decision-making can provide valuable support. Families may also need help understanding that MG symptoms can change from morning to night.
Someone with MG may look well, which is why it is sometimes called an “invisible disease,” while experiencing serious weakness or fatigue. Resting, eating slowly, missing an event, or needing a ride is not a lack of care or commitment. It can be part of managing the disease.
For long distances, I often ask a friend or relative to drive me so that I do not have to worry when my MG symptoms flare.
Finding Support
The Myasthenia Gravis Foundation of America provides information, support, advocacy, research updates, and resources for people with MG and their caregivers.
- General information: https://myasthenia.org/
- Understanding MG: https://myasthenia.org/understanding-mg/overview-mg/
- Treatments: https://myasthenia.org/myasthenia-gravis-treatments/
- Helpline: 1-833-647-8764
The organization also offers resources for newly diagnosed patients, specialist searches, support groups, patient materials, research and clinical-trial information, community events, and emergency education.
Final Reflections
MG has changed how I think about retirement, health, independence, and family. I still have many difficult days, but I am learning to adapt rather than give up and to give myself grace, compassion, and kindness.
I am beginning to laugh at my foggy-brain moments and memory gaps instead of thinking they signal cognitive decline. I have learned to adapt to my unsteady legs and shaky hands, as well as drooping eyelids, twitches, and double vision during heat waves.
When my eye muscles tire, I close my eyes or place an ice pack over them. I meditate and do breathing exercises to calm my body when it is stressed. I watch what I eat and walk daily.
An incurable illness does not mean life has stopped. It means learning to live with new limits, attending to other health conditions, finding purpose, accepting help, planning ahead, and noticing progress, even when it is gradual.
With medical care and support from family and community, many people with MG can continue to live meaningful, active lives.
I have met new friends through online support groups who understand rare diseases like MG and empathize with me during difficult periods. Someday, I hope to run my own support group, using my skills as an educator to help other patients navigate life with MG.
I hope sharing my experience helps others recognize MG symptoms, seek care, ask questions, and know they are not alone. As my newly found community often reminds me, MG is a diagnosis; it does not define me.
This article is for education and personal reflection only. It is not a substitute for medical advice or diagnosis. Make treatment decisions with a qualified healthcare professional.
