MG Simplified

Myasthenia Gravis (MG) is not only hard to say it's hard to understand. It affects every single one of us so differently which is why it's called the snowflake disease, because no 2 snowflakes are alike. I'm going to try to simplify it right now so everyone can understand what it is happening to us that you can't visibly see.

MG is an autoimmune disease which means our bodies attack our own bodies. Depending on what disease it is determines what part of the body our bodies attack.

MG is a neuro muscular disease. This means the part of the body our own bodies attack is the nerve/muscle area.

In every person there is a chemical being sent from the nerve to the muscle... when it works properly, that neuro muscular junction works as it should. The muscles move how they should. You don't have to think about when you walk, talk or breathe, you just do it.

With MG, our bodies are specifically attacking that. The more we use any certain body part, the more it attacks it. This means that less of that chemical is reaching from nerve to muscle, which in return means not enough to make the muscle work properly. That is how we have weakness.

This includes legs, arms, core, face, eyes, throat and diaphragm. So this means walking, driving, using a computer, talking on the phone, having a conversation, reading, swallowing, chewing, smiling, breathing... to name the most common.

MG is unlike the majority of other things as society as a whole is taught to push through it. "Pushing through it" to an MG'er means temporary paralysis. If it paralyzes the diaphragm, it's bad news.

For example, I can start off on a walk walking just fine looking like hey I can walk 3 miles. But after let's say 200 feet, my muscles don't have enough of this chemical getting through to keep working. I am forced to rest, so that my body hopefully stops attacking my leg muscles, so I can walk back.

Another example, if I am outside and it is humid, my diaphragm is working harder with every breath in and out. Breathing is extremely labored. If I do not go into an air conditioned room and allow my breathing to become less labored, my diaphragm will stop, yes, it will stop. Way too many people have been on the ventilator and some have even passed away. It is SO important to stop while we are ahead or it may be too late.

Last example, stress. Stress works just like physically using the muscle works. It attacks, but typically it will attack the whole body. This is why eliminating stress as much as humanly possible is not an option but a necessity. Sometimes I will just have to remove myself from a situation or not go somewhere or not have a conversation because the stress of it is not worth landing in the hospital. This is not a mental thing, it is a physical attack on us.

Healthy people rest after they get tired. MG'ers must rest before AND after and for a much longer period of time. We need to store up, we need to replenish, we need to conserve.

The less we use the muscle, typically the more we have to use, which I know is so backwards, but it is what it is. So we are forced to conserve our energy/strength/use of the muscle in order to make it through a day, an hour, or even one simple task. We are forced to pick and choose what to use this small amount of muscle usage we have in us on. The more we rest, typically, the more we have stored up to use, but it diminishes fast. This is why we must rest more often than not in order to make it through each and every day.

If we were all at a carnival this is how MG would work. Healthy people or those who do not have MG have the unlimited ride wristband. You can do whatever you want without thinking about it. Those with MG are given 20 tickets, for the whole day. Some things cost 3 tickets, some 5 tickets, some 7 tickets. We have to pick and choose what to use these tickets on. When we run out, our fun time is over. Time to rest and recover and that may take minutes, hours, days or it may take a trip to the hospital with emergency treatment.

Yes, we look fine. Yes, for 1 minute, 5 minutes, an hour, maybe even a whole day, we can function fine. But that runs out rapidly. So when you see us, please don't assume because we look fine or are functioning at that moment that we are fine. We aren't. We probably rested for days or hours just to be doing whatever it is we are doing at that moment, even if it's a simple few minute task. This is how we must live our lives in order to remain living. It's confusing and it's why we need awareness. 

Thank you and God bless!