Thanks everyone. I do find it so helpful to have a place to come to talk specifically about MG. My neuro appt went fine. We decided to try me on provigil for daytime fatigue. He said it is used for either/both physical and mental fatigue. My muscle weaknes was not really noticeable though I had tried to wear myself out.

Provigil is a strong, strange drug from my brief use of it - started 100mg last Monday. It is "amphetamine-like" with low addictive qualities... I am certainly experiencing a level of mental clarity - focus and follow-thorugh, as well as not getting sensory overload - sound, sight along with irritablility - when I get fatigued. I am able to lengthen my days a bit, and the muscle weaknes - while not improved - stands out more distinctly.

It's a little uncomfortable in my mind to take a pill for the PLM to sleep and a pill in the morning to stay awake - I feel a bit like Judy Garland! But, I remember I was desperate when I went in, willing to try anything, and I want to see over the next month or so how this works. Thanks, lizzie, for reminding me that steroids are hard to get off once you get on. I walked in to my neuro appt ready to even try that at this point without knowing what's wrong, and I do feel better that is not the route we chose at this point.

I'll see my neuro again in Feb, and we will talk some more about SFEMG - since no on at Kaiser does it, he'd have to get autho to go outside and that is never easy.

I have often referred to this experience over the decade as a medical mystery tour, and know there are multiple things going on. My GP is comfortable dealing with me without specific known diagnosis (as is neuro), and my GP has spoken of the art and science of medicine, that there are many things they simply don't know. I find that helpful. Having nonjudgmental medical guides is hugely important to me.

Remebering to pace myself is always a struggle. This year I finally reached a point where I stopped fighting all the time, and gave in to my body's rhythm, and while there is great loss in that, there is also energy in not fighting all the time. Like you, loisba, each year I have to give things up. I have wanted to be acknowledged for the "heroic" adpatations I have made in my life by doctors, but that's just not the place to go for that.

Judy, I really understand what you are going through. It is hard to deal with being so vital and losing so much. And limbo is a painful place to live. I have not been able to return to my old life or my old self, but I have found out how to live this life. I am not a "ilness is a gift" person. Healthy people love to ask about that, and I usually say if it was a gift, I would wrap it up and give it away. Like it or not, this is the life I have. Good and bad, this is it. I am grateful to have this place to come. Thanks again. Rach