What does well-managed myasthenia gravis look like?

Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or barely surviving?

The answers to these questions will be different for many of us with myasthenia gravis (MG). It doesn’t mean we’re managing our condition any better or worse than others are. MG is, after all, a snowflake disease. It’s been my experience that it’s important to remember this.

Comparing my journey with that of my friends does nothing but set me up for a bad day. What I (and my care team) consider well managed for me could be overkill for someone else, while it might barely keep another person with MG alive.

It’s great that our care teams have a basic idea of what the literature says MG should look like, but we need to know what it looks like for us. The goal is always for me to live my best life possible. As my folks say, “Mileage may vary,” meaning that what my best actually looks from day to day may change.

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How I define ‘well managed’

I consider my myasthenia gravis well managed when I don’t have to take extra meds due to air hunger. I can eat whatever food I want and not choke or aspirate. I don’t have a daily experience of double vision. I can hobble around my house without my cane.

I can continue to improve and increase my daily step count. Currently, that count sits at 1,500-1,600 steps a day. Once I can maintain that for two weeks, I increase my goal by 100 steps a day. I repeat this process as often as I can.

I can work 20 hours a week at my website design business, which I run from home. I can write my columns ahead of time and not wait until the last minute. I can drive to visit my son, who lives three hours away, and not worry about whether my legs will be strong enough to get me home.

For me, well-managed MG means I’m not stuck in bed or on the couch for days or weeks on end and I’m doing more than just surviving the days.

How I reach ‘well managed’

It hasn’t been easy to get here. I spent years fighting to be heard and have someone piece everything together. When you have a rare disease, and a rare type of that disease (I have seronegative MG), and an unusual symptom presentation, many hurdles must be conquered to reach the treatment phase. Conquer it I did, though. It pays to be the squeaky wheel.

Since my diagnosis in 2018, I’ve had a thymectomy in 2019 and tried a variety of medications and combinations of those meds: Mestinon (pyridostigmine bromide), CellCept (mycophenolate mofetil), Imuran (azathioprine), prednisone, intravenous immunoglobulin (IVIG) for emergency use only, and IVIG for therapeutic treatment.

Through much trial and error, my current care team and I have landed on a treatment plan that works well for me and allows me to live my best life. I’m encouraged and supported by them to push boundaries and see just how far I can go.

Staying in the ‘happy zone’

When I’m able to do the things I enjoy in moderation, and without causing a symptom flare, I call this my “happy zone.” I know that if I push one day, I must pull back and rest the next so I can stay in the zone.

Managing myasthenia gravis and all my other chronic health issues isn’t just about surviving. I want to live. I want to find joy in the small moments. I want to find a way to stay in my happy zone and even extend what gets included in that zone.

So cheers, ladies and gents. Here’s to us showing myasthenia gravis who’s boss by finding a treatment plan that works for our individual needs and learning to live our best lives.

What does well-managed MG look like for you? Please share in the comments.

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.