It’s time for a Myasthenia Gravis flare up of 2011 since it’s summer and the heat and humidity are horrible. I’ve been so thankful that the Myasthenia Gravis has been at bay for a long time with just some normal symptoms. I’ve been going through a stressful time since November of 2010 when my daughter first began having some serious health issues. I thought the stress and going back and forth to her school, to the emergency room and to doctors would have done me in, but except for the normal weakness, fatigue and droopy eyelid, I’ve been pretty good.
But the flare up hit me about two weeks ago. I thought it was just going to be a few days, but as it got worse, I knew it was time to see my neurologist. My symptoms were total body weakness, difficulty walking, swallowing and talking and extreme fatigue. I also started to get the shakes – that’s when my muscles twitch even when I’m resting. I couldn’t even drive. A new symptom I had this time around was coughing every time I ate.
My neurologist knew right away that I was in a bad flare up. The drive to see him wore me out and I wasn’t even driving. I could hardly sit up in the chair and looked like a rag doll. Now I know where that term comes from! (Myasthenia Gravis is sometimes called the rag doll disease.)
My strength wasn’t that bad, but that’s nothing new. I have more problems with stamina than strength, plus the Mestinon was just kicking in as he examined me. But I wasn’t able to maintain my seated position for long, my both eyes were drooping and I was short of breath. My doctor explained that the coughing while eating was a signal that my swallowing was getting worse.
He increased the Mestinon from 120 mgs every 3 hours to 150 mgs every other dose and the Cellcept from 2500 mgs every day to 3000 mgs every day. If my symptoms worsen, I am to call him or go to the ER. If I don’t see any relief in one month, I am to call him.
Do you have a Myasthenia Gravis flare up every summer like me?