a man standing at an oversized computer and stack of books, learning about myasthenia gravis

Learning Everything I Can About Myasthenia Gravis

In this guest post, Mike Stabile talks about how he has navigated the past few years since his myasthenia gravis (MG) diagnosis. After vowing to learn everything he could about MG, Mike has used his knowledge to help others, get involved in a local support group, and advocate for himself. Read on to learn about Mike’s experience.

My MG diagnosis

When the pandemic began in early 2020, I woke up one morning with diplopia (double vision). Fearing a stroke, I raced to the emergency room (ER). Unable to confirm anything, the ER doctors referred me to a neurologist who, 2 months later, verified my late-onset ocular myasthenia gravis (MG).

Since 2021, my MG has evolved to a form informally termed "bulbar MG," where my symptoms during flare-ups are ptosis (eyelid drooping), dysarthria (difficulty speaking), dysphagia (difficulty swallowing), and weak facial muscles. I tend to cycle through flare-ups and remissions about 2 to 3 times a year now.

I learned everything I could about MG

In July 2022, I was hospitalized for 5 days for failure to thrive because I couldn't swallow food or my MG medicines (Mestinon® and prednisone) during a flare-up. Upon release, I vowed to myself to learn everything I could about this disease and the resources available on the internet using my background in physiology and technical work in hospital medicine.

I discovered numerous organizations such as the Myasthenia Gravis Foundation of America, Myasthenia Gravis Association, Conquer MG, Myasthenia-Gavis.com, and many others, along with support groups across the nation whose virtual meetings I began attending. I joined the Southern California MG Support Group in early 2023 and subsequently offered to set up a website for the support group this past summer.

Setting up an informational website for our support group

Since I had acquired a wealth of information about MG during the previous year, I had plenty of content available to create a useful website for our group members. One of the driving forces of my personality is helping others by using resources, knowledge, and skills I've obtained throughout my life. Creating this website, MGSoCalGroup.com, was the perfect vehicle for doing this. I now constantly update and add content that I think other members might find useful.

Becoming my own advocate

By far the most important thing I've learned is to become my own advocate and learn as much as possible about every aspect of this disease, even down to the biochemical level.

My neurologist does not specialize in MG but does have some experience treating a few MG patients. However, when I combine my experience and knowledge gained after 4 years of MG along with the doctor's willingness (after gaining trust in me) to let me advocate for myself, I feel satisfied with my care so far.

In fact, over the past year, my flare-ups have gradually gotten milder. I also attribute this to:

  • Learning to recognize the start of a flare-up
  • How to best use and wean up/down on prednisone and Mestinon
  • Recognizing and avoiding triggers
  • Respecting the state of being immunocompromised
  • Learning the best nutrition habits
  • Being as positive as possible about life

By the way, it turns out that proper nutrition is much more important than I first realized.

Misconceptions about the condition

From all I've seen and heard from others, people will tend to think MGers are just lazy. They don't understand that resting one's muscles can actually be a form of therapy and may improve symptoms. I have noticed that even doctors and physical therapists, for example, will push MGers to work harder at building up muscle strength, not bothering to learn that such efforts can often exacerbate the symptoms.

I feel very fortunate to have only the bulbar symptoms of MG, so I can lightly to moderately exercise my body from the neck down without ever developing widespread limb fatigue. I do have to be careful not to over-exert myself (such as doing "cardio" exercise) or I'll trigger a flare-up – a lesson I learned the hard way.

Hopeful for a cure

Advances in MG research are rapidly accelerating, and I'm hopeful we might have a cure discovered during our lifetime. Also, despite all the new drug therapies available, health insurers can be the biggest roadblock to obtaining the best available care.

My advice for those diagnosed with MG

My advice for those with MG is to learn as much as you possibly can about your disease and try to stay up-to-date with all the advances in treatments and medications currently available or "in the pipeline."

Always strive for the best care you can get, and don't let incompetent doctors and ill-advised friends and family dictate your decisions and mental well-being. Always be your own advocate, or else find a trustworthy and compassionate one (and treat them with great respect).

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