My brother knew something was wrong long before his diagnosis

Dr. Seuss once said, “Sometimes you will never know the value of a moment until it becomes a memory.” That’s another way of saying you never know what you have until it’s gone, whether it’s a relationship, a material item, or a mindset (such as innocence). It’s nice to remember things the way we want to remember them.

Or perhaps we project what we want to see.

In 2010, I noticed a pimple protruding from my right shoulder. It didn’t feel like a pimple, though. I ignored it for a year, which was the worst move I could’ve made. Even now, I remember telling myself that it was just a pimple and that I shouldn’t worry.

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A year later, I got it checked out and was diagnosed with dermatofibrosarcoma protuberens, a rare form of skin cancer. It took two procedures to remove the pimple, and I’ve thankfully been free of it since. That diagnosis was stressful. Even now I remember where I was when it happened, the call from the doctor, and the shock my system felt upon learning the news.

My twin brother, Aaron, has myasthenia gravis (MG). I’m not comparing my diagnosis with his. I’ve been free of symptoms since 2011, while MG is incurable. What I am saying is that it took me a long time to realize that Aaron probably sensed his MG long before he was diagnosed or even knew what MG was.

My teenage twin’s muscle weakness

Aaron was diagnosed with MG in 1999, when he was 24 years old. He experienced extreme muscle weakness and suddenly couldn’t use his hands. MG flare-ups have since become a constant in his life.

Further, Aaron’s eyes became severely misaligned for almost 25 years because of his MG. He finally had successful strabismus surgery last fall to correct the issue.

In all of this time, though, it never occurred to me to consider that MG had affected Aaron long before his diagnosis.

“I remember weakness in my back,” Aaron told me when I asked him about his first sense that something might be wrong with his health. He also said he’d been unusually out of breath despite being an athletic person. That began when he was 18.

Aaron said he remembered being constantly tired while working as a manual laborer. He always thought something was wrong, but he couldn’t pinpoint the cause.

I felt awful for him. Aaron knew something was probably wrong with him six years or more before he was diagnosed with MG. Maybe that’s why he was so temperamental as a teen, now that I think about it.

I’m grateful that he agrees to answer my questions about MG, but I feel terrible bringing up memories that he might not want to revisit. Aaron has been silent about his MG for most of his life.

To stay healthy, he said, seeing his doctor and learning about new MG treatments matter most now. He added that he can’t change how he got to where he is; all he can do is handle what he can control.

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.