Hey everyone. Thanks for all the replies
! I've relayed all this to the family.
So, the Prednisone doesn't seem to really be making a difference, yet.
He is having a very difficult time eating--this started about three weeks ago. We found information that very cold/hot and/or food with spice could be the cause. He's very frustrated and it's hard to watch him eat. He also begins to have trouble with his tongue if he talks for an extended amount of time. The way he sounds seems like his tongue is stuck at the bottom of his mouth. Does anyone have similar problems? What steps did you take to help with this?
It's scaring me how fast these symptoms are coming on. The problems with his tongue and eyes (lids not opening) are issues that are new to us, so we're trying to find out as much information as we can. His vision is OK--no double/blurred vision ... that's how he was initially diagnosed.
He is doing well on the Prednisone ... he doesn't seem to be having many side effects and hopefully it stays that way. He did mention that he lost two pounds since starting the Prednisone. My theory for his weight loss is because he is not eating as much or as fast simply because he can't.
I'm worried he is going to choke because when food gets under his tongue he has a VERY difficult time getting it out.
He has dropped to half a pill with his MG medicine, which is only helping with his eyelids--but even that is a great improvement.
I know that remission occurs with Lupus, and I've read that is can also occur with MG. Have any of you gone into remission? If so, how long did it last?
Are there certain steps for a patient to follow, such as diet, exercise, etc. that an MG patient should take to help with the disease? I know with my Lupus I stick to a pretty healthy diet. I exercise (lightly) and try to avoid the sun (but I LOVE the sun). My biggest downfall is smoking.
Thanks again for everyone's help! I'm passing everything along and using your input to help as much as I can.