How I Explain MG to Others
I can start out the day just fine. I'm ready to go as if I didn't have myasthenia gravis (MG), even if it's a day where I'm a little slow. But eventually, my muscles all over my body get worn out. For example, going on 6 years now, just under my left shoulder blade, all around my shoulder, and down my arm is extremely painful and weak. This is pretty much a constant every day and all night long!
A neuromuscular disorder
As far as my understanding of MG, it’s a neuromuscular disorder. I'm using my left shoulder and arm as an example, but I am not a doctor. This is just the way I see it, based off my own personal experience.
By the way, there are other parts of my body that I could have used an example, also. Neuromuscular to me means the nerves and the muscles have a relationship. For those of us with MG, it's kind of a on-again, off-again relationship.
So, this is how I have explained MG to people: Imagine trying to play baseball with a glove that has holes in it. The holes are big enough for the ball to slide right through. Now, imagine the balls are the chemicals that our body needs to be able to function correctly. The glove helps stop those chemicals and directs them to the proper places in the body.
When these chemicals are caught, the nerves in our body can actually tell the muscles what they need to do! But with the holes in the gloves, combined with a short supply of balls, we're kind of lacking information. It's not that there's actually anything wrong with my nerves or my muscles, except for the fact they're not being fed a steady stream of the chemicals that are needed.
I know it's not great, but it's simple explanation that most people can understand easily from my experience.
What helps me with the symptoms
I've found that my medication has helped - I take CellCept and and some Prednisone, and also generic Mestinon, along with the old standby of rest! Unfortunately, I've ran into the problem of losing muscle because of resting too much. It's a very individualized, fine line of people with MG can do and when.
But for me, when it comes to my arms ... they're really hard to rest. They just kind of hang off my shoulders. That actually makes my shoulder muscles work harder trying to support my arms. Although I'm right-handed for writing, I do just about everything else with my left arm/hand. Therefore, that whole side is overworked, causing more fatigue all of the time.
When the fatigue sets in
As an example, I know the fatigue has set in when getting a quart of milk out of the refrigerator. I pick it up and get it our of the refrigerator just fine. Then I dropped the whole quart of milk on the floor, it didn't just slip out of my hands. At that point, I had absolutely no muscle or grip strength.
Yes, the medications help. But at this point I'm thinking I need to put my arm in a sling just so I can't use it and so that my shoulder does not have to support my arm on its own.
Have you found an exercise routine that works for you?
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