Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have been looking and reading about the various side effects of prednisone and am quite concerned... The doctor wanted me to start a small dose and build up, but I am scared of what I am learning. Can you share any side effects you have personally encountered? Has it truly been worth using??
Peter
Thinking about you today. This disease is different Bluejay. We are used to illnesses that we buck through. The only way to stop progression of this disease is to rest. This disease gets worse if we push, push, push. It"s one thing to keep moving forward when we are felling great and then to rest but if we push too hard when we have symptoms, we can get really, really bad.
I had two really busy days in a row this week. Today I am dead man walking. The couch is the only place I can be most of the day.
I am very concerned about your numbness. Do you have a job that requires you to talk a lot? Is that causing you to over use your mouth. That could really cause damage. You night really need to really stop before you go way backwards and can't catch up. When I was in the hospital I remember a neurologist sitting in a chair looking at me with pity and he said, This is a nasty disease, Is your doc a specialist in neuro muscular diseases? Are you on mestinon? Fighting usually works with colds and flus but be careful this disease can win by stopping you severely.
Yes, I teach younger ones, so talking is a necessity. And energy. I am to meet with neurologist again in a couple of weeks. I had a second job, but I quit. I was experiencing too many muscle twitches, numbness, etc. Coworkers are helping make sure I don't have recess duties in extreme heat, so that has been helpful. It's been 9 years since first symptoms... this summer was when I was told they were sure it was MG. So at next appt, I am going to ask what his long term plans are. I am thinking of calling and letting them know how things are going to see if he thinks need to increase prednisone before appt. He has not mentioned anything long range... so that will be my first question. As soon as I get home, I rest. My family has been really good to help as needed, and I go to bed early when my son does. Just a balancing act at times. Has definitely helped quitting 2nd job.