Dear Annie,

Thanks for your message. I'm still here! I'm not in the hospital. I saw the neurologist on Wednesday, and my gastroenterologist today. Monday and Tuesday, I have IVIG infusions, so hopefully that will help. I'm trying to do my best.

Thursday, I will see the neuromuscular specialist at the teaching hospital, so that will be an important day. I have seen this physician in the past. But it is quite awkward, because he doesn't like the fact that I have had negative test results. He sent me away and told me not to return because I had no diagnosis and there was nothing to treat even if I was having symptoms. However, my doctors are unified that I need additional care and advice. They all want me to return anyway, and my local neurologist in particular raised a ruckus. She got me an urgent appointment there (usually it takes three months, so I wouldn't typically be seen until November, even though I am a returning patient). The hard thing is that I think one of these neuromuscular specialists needs to be brave and make a diagnosis based on symptoms, which I guess they really don't like doing. Either that, or they need to do some further testing. We've done all of the standard testing by now. I don't know how the tests come out negative, but I know at least one other person who has MG and had the same experience. So I know it is possible for a patient to have it anyway despite normal test results.

Then again, my neurologist said if it turns out that this isn't MG - if they did tests and came out with a different diagnosis or different name for the problem, it really didn't matter as long as we had a name for it and a treatment. That is correct also. She made a point to the clinic at the teaching hospital that I am quite sick and need treatment, and I will really have to do the same when I am there next week, she said.

Thanks to you and to everyone here for your kindness and support. I'm so grateful to you.

Take care,
Erin