Here it is already June; the month of Myasthenia Gravis Awareness. The Myasthenia Gravis Foundations writes, “The prevalence of myasthenia gravis in the United States is estimated at 14 to 20 per 100,000 population, approximately 36,000 to 60,000 cases in the United States. However, myasthenia gravis remains underdiagnosed and the prevalence is probably higher”. That last sentence shows how critical awareness is. It took TWO years for Gary to get a diagnosis simply from lack of awareness.
We have learned to question, question, and question people, nurses, doctors, etc. In fact, we recently became aware that we haven’t been questioning enough. At Gary’s last Vyvgart infusion on June 4th, Gary was given TOO MUCH of the medication. We discovered that after he had already come home from the treatment. The following day, Wednesday, he had tingling all over his body, was dizzy, shaky, had a headache, bone aches, and extreme fatigue. He slept most of Wednesday and woke Thursday morning without most of the side effects. New lesson: before getting infused ask WHAT is the medication and WHAT is the dosage. Make the nurse double check. I have always asked this question concerning shots or pills they give him in office or hospital but never thought to ask during an infusion. Lesson learned!
As I mentioned in the last blog, I bought an electric chair for Gary. IT ARRIVED!! Woo hoo! I’m letting you know he has taken to the neighborhood streets so watch out! I’m sure you will see burn-outs in the future, and I’m sure he will figure out how to make electric chairs a class in drag racing. HA! For now he is still learning how to use it. When he first took it out he accidentally(?) hit the “help me” button. I have a video of it and will see if I can download it here. I’m currently looking on Amazon for padding for the house as he has tried riding it inside. Egads! Am sure future postings will show his modifications on this chair.
Current symptoms: double vision, muscle weakness – holding head up, using arms and legs, some trouble with chewing both hard and soft foods, food not going all the way down pipe. These symptoms are somewhat mild in the morning and get progressively worse as the day goes by. Typically by 4/5 he is needing to simply sit in his chair for the remainder of the day.
Current medications: Vyvgart (he will get his third dose of 4 tomorrow), 40mg of Prednisone, and Mestinon. He does take an antibiotic 3 times a week to protect his lungs. Of course, due to the Prednisone he also take insulin shots 4 times a day. His sugar readings have shown improvement since the heart failure diagnosis and new medications specifically Farxiga. We are hopeful he will be able to decrease some of those insulin shots before long.
Gary continues to enjoy working and hanging out with the grandkids. We both are finding ways to handle this new normal. Thank goodness we aren’t on this journey alone! We feel God’s presence every step of the way. As Gary reminds everyone…
He Is Blessed
i am blessed 