MG Gave Me Lemons, So I Made Lemonade

Being diagnosed with myasthenia gravis (MG) can be a shock. Not only are you confronted by a condition you’ve never heard of before, but you’re also faced with change.

Change in your habits, change in your independence, and change in what you feel capable of doing from one day to the next. For me, this change hit deep, and it hit hard.

Noticing fatigue

For years, I dedicated my life to Brazilian Jiu-Jitsu. It was my whole identity. I work in marketing for a high-level online jiu-jitsu company, I’ve trained around the world, and I even have the words “Jiu Jitsu” in large Japanese kanji tattooed across the left side of my body.

Before diagnosis, I gradually felt fatigued and noticed I couldn’t recover after training like I used to.

Eventually, I couldn’t hold myself up during sparring and started each round sitting on my butt, rather than wrestling from a standing position. How could this be happening? Why wouldn’t my legs just hold my weight?

It hurt my identity

Breathing also became laborious. My training partners would say things like, "You're really out of shape now, huh?" And I believed it. I mean, why wouldn’t I? I never knew MG existed, let alone I, a fit and healthy person, would have it.

After teaching class, I would spend 1 to 2 hours laying on the mat or sitting in my car before driving home, because I just couldn’t move. "I’m really out of shape," I thought to myself.

I hardly had an ounce of fat on me, I ate well, I exercised, and rarely drank alcohol. But somehow, I was out of shape. And this hurt me. Because it hurt my identity.

Getting my diagnosis

I added sprints on the beach twice a week to my already stacked routine. I tried being vegetarian, vegan, keto, paleo, and I fasted. I tried cold exposure therapy and breathwork every day for 2 years without missing a beat. I even met the Iceman Wim Hof at one of his seminars.

I tried supplements and saunas but the fatigue got even worse. One of my training partners eventually suggested I might be low in testosterone. After consulting with my doctor, a blood test found I was actually producing naturally high levels of testosterone.

But, this visit turned out to be a blessing in disguise. You see, my symptoms made him think that I may have this "kinda rarish neuromuscular disease called myasthenia gravis" and that maybe we should test for it just in case.

When the test results came back, I had my answer.

More questions than answers

Ok. I have myasthenia gravis. It sounds more like a Harry Potter spell than a fault in my immune system, but what does it mean ...

What does this mean, for me? What changes will this impose on my life? More importantly, if this stops me from doing what I dedicated my life to ... jiu-jitsu... will I still be me?

The benefits of treatment

Not long after diagnosis, I met with my neurologist who put me on a regimen of prednisolone and IVIG infusions. For me, the treatment was a success. Over the coming months my condition improved and I felt better than I had in years.

I actually felt like a teenager again. But, while this energy boost I felt was amazing, it didn’t last. Over time, I returned to being limited in what I could do on the jiu-jitsu mats.

Don’t get me wrong. It wasn’t nearly as bad as it was before. But I had to change the way I approached training. I only trained with people I knew could control their pace and who I trusted could stop when they saw I started to fatigue.

I sparred fewer rounds, but I was happy.

With change comes growth

Unfortunately, as I weaned down from prednisolone and added mycophenolate mofetil to my treatment, the excess energy dissipated.

While I am managing MG well, I’ve had to cut down on my work hours and I no longer have the energy to take part in the sport I loved. But it’s ok because I found strength within myself to change.

I replaced jiu-jitsu with a love for learning. As a hobby, I started taking online classes in biotechnology to learn more about MG and the immune system. I found a love for biochemistry and human physiology, and have since undertaken a bachelor's degree in biomedical science so that one day I can hopefully help others.

MG may have changed my life. But the change has helped me to grow. I may have lost my identity. But I’m still me. And I’m still strong. And so are you.