My twin’s advice for those new to an MG diagnosis

My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999. He told me that he wants to offer advice and ideas to those newly diagnosed with the condition.

There was even less awareness about MG in the late ’90s and early ’00s than there is now. The internet was in its infancy, Aaron didn’t have the resources he has now, and he believes he made mistakes that others could learn from. If Aaron can help anyone with MG to avoid going through what he did, that would make him happy.

I asked him to talk about the day he received his diagnosis and his first few years of treatment. I also asked him to clarify if he had any regrets from that time, and what he’d do differently.

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He started by telling me that he’d spent his late teens and early 20s in denial about the severe muscle weakness and double vision he was experiencing. Instead of going to the doctor, he pretended it was simply fatigue. He wondered if he made the problem worse by waiting so long to get checked out.

He said it felt like time stood still when he was told he had MG. “Everything stopped,” he said. “I wasn’t even scared when I heard my diagnosis. I just got angry.”

Aaron told the doctor that he hadn’t done anything wrong and didn’t understand why this was happening to him. He actually thought for a moment that MG was some type of sexually transmitted disease and told the doctor that he always used protection.

“How the hell did I get MG?” Aaron asked. The doctor couldn’t answer.

One of his biggest regrets is that he didn’t ask enough questions, much less the right ones. He remembers being in shock and denial, and wanting to believe his MG was something else.

He told me that he felt so alone when he was diagnosed. He knew it was bad, but he didn’t know anything else. It was 1999, and the doctor who diagnosed him didn’t fully understand MG, either. Aaron said the doctor had to get out a big medical textbook and use it to explain the condition to him.

He eventually saw another doctor who explained the disease thoroughly and recommended Aaron get a thymectomy. At the time, everyone in our family believed he’d had a tumor removed; it was only recently that I learned the truth about the surgery.

Sensing his frustration with these memories, I asked Aaron what he wishes he’d done differently now that he has the benefit of experience and hindsight.

He wishes he’d gone to another doctor immediately, since the doctor who diagnosed him knew little about the disease. He regrets not doing more research about MG and its treatments sooner.

Aaron said the thymectomy was a traumatizing experience; he was so angry that his MG flare-ups worsened for a few years. The last thing he wanted to do was undergo more surgery or treatments, even though MG had altered his life. He said it’s a shame that he waited so long to consider other treatment options available to him. My twin feared the unknown and worried things would never change.

As a result, he didn’t have strabismus surgery to correct his eye misalignment until late 2024. He was afraid, and to my shame, I once advised him against it, fearing the results. Aaron wishes he’d had the surgery years earlier.

Another big regret is that he didn’t tell anyone how scared he was after his diagnosis. Aaron was frequently depressed and angry during those early years, which didn’t help.

In 2019, Aaron experienced partial disease remission. He told me that if he had adopted an exercise routine, considered his treatment options, and dealt with his anger years earlier, perhaps he could’ve experienced remission sooner, or maybe it would’ve lasted longer.

Aaron hopes others can learn from his experience. Hope, help, and options are always available, but this can be hard to accept when your life has been turned upside down. If you’re new to an MG diagnosis, Aaron wants you to ask for help, demand the best from your doctors, ask questions, and always consider your options.

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.