a man breathing and counting on his fingers, debating when to get help for myasthenia gravis

Should I Wait? When I Know I Need Help and Just How Much

After having myasthenia gravis (MG) for almost 3 decades, I have gotten pretty good at knowing when I need to call my neurologist during a flare. For me, my first symptoms are always bulbar, with difficulty speaking, chewing, and swallowing.

This progresses to arm and leg weakness, blurred and double vision, and difficulty breathing. I tend to have a stubborn streak, so I will all too often try to "push through" my symptoms. This, in my experience, is a mistake.

Pushing through

When I say "push through" that can mean different things - including attempting to do things that I am not strong enough to do at the moment. The other meaning, for me, is pretending I’m not as bad off as I am while attempting to "rest my way out of symptoms."

I have tried far too many times to recover on my own from symptoms. Most of the time, I am able to do that while I wait for my upcoming infusion. There are times however when I should not be waiting it out.

Know your own body

I use the whisper count test to decide if I need to go to the hospital right away or can wait for a reply from my doctor. Of course, please keep in mind that everyone is different and you should speak to your physician about when you need to call them, go to the emergency room, or call 911.

The whisper count is where you inhale deeply, exhale completely, inhale deeply again and count in a low whisper to see how high you can go. It helps to do this a few times when you are not experiencing symptoms so you have a baseline of how high you can count while your lungs and diaphragm are not compromised.

For example, my baseline is 78 (which is very high, but I was trained as a vocalist, so that isn’t surprising). I call my doctor anytime my count is lower than 40 and I immediately go to the closest emergency room if it is below 20. If it is below 10 we call 911. Again, this has been discussed at length with my entire healthcare team and this is what works for me, personally.

Progression of symptoms

I have been hospitalized multiple times due to a myasthenic crisis as I have treatment-refractory MG. The progression of my symptoms is usually gradual until it isn’t. Once I get past a certain point (as I’ve described above), my family, friends, and I all know what level of care I need to receive.

It is important to become familiar with your individual symptoms and be aware that in some cases, they can progress very rapidly. Try to listen to your body and act accordingly. It isn’t always easy to say no to experiences that you want to participate in, nor is it easy to admit when you need help.

Talk to your healthcare team about what your individual plan should look like, particularly if you are newly diagnosed. At times, life with MG can be filled with uncertainty and it has helped me and my caregivers tremendously to have a plan of action.

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