Thursday, September 19, 2013

Can you die from myasthenia gravis? Part 2

Can you die from myasthenia gravis? Part two

In my last post, I told you about myasthenic crisis. For newly diagnosed people, MG crisis is a terrifying complication. But, I actually fear choking to death far more than a myasthenic crisis.

2.) Choking

If myasthenia gravis weakens the muscles in your mouth, you will slur your speech. Because I am extra talented, I actually have two different types of slurred speech. The first one is when my tongue extends past my teeth and flattens. I sound like Sylvester the Cat. The second way I slur my speech is when my tongue won’t extend to my teeth. Then I sound like I’m drunk.
Signs > First Aid > First Aid, Injury, Emergency
On days when my speech is weak, that is a red flag warning that my ability to swallow is compromised. I have a weak gag reflex, so I can't always know I've reverse engineered a swallow until I have food in my lungs. I feel like I waterboarded myself and cough until I puke. Choking to death is a possibility, so I have learned to be cautious.

On bad eating days, I choose my foods carefully. I don't eat mixed textured foods. What in the *#$% is a mixed textured food? Anything that is a thin liquid and a solid together, like milk and cereal, noodles and soup. My mouth can either swallow the liquids, or the solids, but not both. Ripe fruit is out of the question.

The real danger is a piece of food getting past my weak gag reflex and cutting off my airway. Meat, popcorn, corn, peas, grapes, hot dogs, anything with little parts, careful. Foods that shatter into crumbs when you bite them like granola bars, and crackers, careful. Even if choking doesn't cut off my airway, getting bits of food in my lungs can cause aspiration pneumonia.  If aspiration pneumonia happens, see cause of death #1.

Eating with MG is tricky. Some things I think will be easy to eat, like mashed potatoes, can be hard because I can't move them around my mouth. Whipped cream has the same problem. It’s fluffy. It melts into a completely different texture. My tongue tends to push it out of my mouth instead of swallowing it. Yogurt has the same problem. Sauces help foods stick together so swallowing is easier. However, nothing helps more than your own inner wisdom. Look at your plate, determine what you could possibly choke on, and eat that first when you have more energy during the meal. Your ability to eat will diminish later in the meal.

On a day when you are slurring your speech, choose your foods wisely. Nothing runny, or sticky, or hard. I have survived on Boost drinks and Boost Nutritional Pudding for weeks. Then MG got bored attacking my mouth and moved on to my legs.

Remember, no matter what crazy thing MG is doing, chances are it will relent at some point. The only thing stable about life with MG is how unstable it is. The good news is, we’re smart enough to outsmart it.

2 comments:

  1. Nicely written. Thanks for the mention of the boost products. I'm going to keep some on hand for those days that you described because my MG is often just like that.

    ReplyDelete
  2. I've had generalized Mag for 15years now and it only seems to be getting worse even with the meds..it's gotten to the point where I've had to crawl around my house bc every time I stand I tip over.. House hold chores have become hard to do.. I have to rush thru it just to try and get it finished..my drs can only subscribe more meds tht don't really help

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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