Thanks Annie
She is hanging in there. However she hates all this testing.
The thing about her RNS test was the Dr said it was abnormal. I thought it was positive or negative. That's the problem with these tests none are definitive. Someone is going to have to sit down look at all data and make a decision. They can test you to death and get nowhere.
Mike
Quote:
Originally Posted by AnnieB3
Mike, How is your sister doing? I imagine this is all very overwhelming to her. It was to me at first too. Heck, it still is years later.
An RNS can be positive in lots of disorders, it's not "specific" to MG. If it showed a decrement, meaning that the signal kept going down, then it is indicative of MG (because MG gets worse upon exertion). The RNS sort of simulates "exercise" by "electrocuting" the muscle over and over again. 
It's a good idea to send her labs to Mayo, since they invented their antibody test and have found it to be more accurate than other places.
Older people can have ptosis from aging too. But in your family, it may be MG!
It sounds like you guys are getting good care. That's half the battle. Learning all about MG and the things that can make it worse, the drugs, etc. is really important. I hope you'll let her know about things like the MGFA website: www.myasthenia.org
There are probably more families like yours. I have found that my ancestors often didn't talk about their health problems, which I find very unhealthy, and went about their lives no matter what was going on. Damn Norwegians. 
Annie |