MG age and MG stage echo what patients have been saying all along

Living with myasthenia gravis (MG) teaches you one thing pretty fast: This disease doesn’t move in straight lines. It zigzags. It doubles back. It changes the rules midday just to keep things spicy.

One morning, I can get dressed and feel almost hunky-dory. But then, on a day before my next intravenous immunoglobulin (IVIG) infusion, just before supper, my voice might be slurring, my swallowing ability might feel questionable, and my muscles might have decided they’re done participating.

For a long time, doctors tried to explain MG to me by using neat little boxes: ocular, generalized, mild, severe. Those labels might look tidy on paper, but they never quite fit real life. MG is too slippery for that. It shifts hour by hour, day by day, year by year.

Lately, though, I’ve noticed researchers using language that actually makes sense to those of us living in these bodies. They’re talking about MG age and MG stage. And for once, the science is starting to line up with what I think patients have been saying all along.

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MG age is about how long it’s been ‘riding shotgun’

MG age isn’t about how many candles are on your birthday cake. It’s about how long MG has been riding shotgun in your life. From the first weird symptom to today, that entire stretch of time matters. MG behaves differently depending on how long it’s been hanging around.

While every patient’s experience is unique, I believe that MG tends to be loud and unpredictable early on. Symptoms swing hard and fast. Weakness can feel dramatic and terrifying. That first year or two is often when MG hits its peak severity, which is why early diagnosis and treatment are such a big deal. Your immune system is still in full chaos mode, throwing antibodies around like confetti.

Later on, MG often changes its tactics. Instead of wild swings, it can settle into something quieter, but heavier. Long-term medication side effects pile up. Fatigue becomes chronic instead of episodic. Other health issues start stacking on top of MG, like a poorly organized junk drawer. The disease doesn’t necessarily get “worse,” but rather more complicated.

My own MG age is long. My symptoms started in 2011, but I didn’t receive a diagnosis until 2018. That seven-year gap matters. By the time someone finally put all the pieces together about what was happening in my body, MG had already dug in deep. I’d spent years pushing through unexplained weakness, choking on spit, having my voice slide into nothingness, knowing that something was very wrong.

MG stage is the here and now

If MG age is about how long you’ve been on this ride, MG stage is about where you’re standing right now. Stage reflects your current reality: how severe your symptoms are, which muscles are affected, how well your treatments are working, and whether you’re stable, flaring, or clawing your way back from a crash.

Doctors have used formal staging systems for years, but anyone living with MG knows the truth. You can look “mild” on paper and still struggle to get through a typical day. You can appear stable and still have symptoms that quietly limit everything you do. MG doesn’t care about clean categories.

My own MG stage sits in the more advanced range. My symptoms affect multiple muscle groups, including those involved in breathing and swallowing. That reality shapes every decision I make, from how I pace my day to how far I push myself before resting my tush. I live by energy math now. Every activity incurs a cost, and overdrawing has consequences.

But the stage isn’t just about limitation; it’s also about adaptation. I’ve learned how to pace myself with intention, how to ask for help without apologizing, and how to be gentle with myself in a way I never did before MG forced me to slow down.

Understanding the stage is crucial because treatment decisions depend on it. Severe or rapidly worsening MG may require fast-acting treatments like IVIG or plasma exchange. More stable disease might focus on long-term immune suppression or newer targeted therapies. The stage isn’t a judgment; it’s more of a snapshot that helps guide care.

It seems that researchers are now paying attention to MG age and stage because they’re finally acknowledging that MG is not a single disease with a single story. People diagnosed later in life often look different clinically than those diagnosed at a younger age. Long-standing MG behaves differently from newly diagnosed MG. New treatments don’t affect everyone the same way, and age and stage help explain why.

For us, this language offers validation. If your MG feels different now than it did years ago, you’re not imagining it. If your treatment needs keep changing, that’s not failure. That’s disease evolution.

MG age is the story of how long you’ve carried this condition. MG stage is the truth of how it affects you today. And together, they remind us of something important: MG is not static; it’s a moving landscape. Knowing where you are on that landscape matters, and it’s about time the science caught up.

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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.