Suev and Jana,

I have similar feelings. I don't want to take any more drugs, Mestinon is all I want to take...so I hesitate to keep telling my Neuro about how I am not able to "live a normal life", but I tell him anyway.

He asks how I am doing and I tell him that generally I am doing ok, at least I can eat and brush my hair and take care of myself, and I am still thankful for that, but I can't do much else. He asks what I can't do and I start listing to him things such as work, have hobbies, do things with my kids, do any evening activities...and he'll interupt me and tell me he can't do anything about that, maybe I need to go to a therapist or take more Mestinon. He asks if I'm depressed, I say yes, and explain it is because I rarely get to do anything enjoyable, I spend all my waking minutes dealing with MG. He gave me a card for a therapist.

I think the next time I'll remind him that he had told me I would be able to live a normal life and that I can't. I hate complaining because I am enourmously thankful for a somewhat fast diagnosis and treatment, it saved my life in my opinion. I am mostly just not happy about this statement about living normally. I think it would be better if the doctors were honest and told us that we would need to make adjustments, but that given time we should be able to find a new way to live, maybe even make suggestions to some type of therapist who can help with this.

I am hopeful that I can find a new way to live, but it is taking so long. I have learned how to walk with MG, and learned how to see when I get double vision, I am now in the process of learning new habits to cope with stress and finances (I applied for Soc Sec disability).

These are the issues I wish my doctor would help me with. Suggestions on how to learn how to live with MG. It is obvious to me that even on my best days, I can't live normally. As Alice mentioned, we can do normal things sometimes, but there is always that crash afterwards....I do decide sone days when I feel okay to do normal things, but I have to plan for at least three days of not being able to do anything afterwards, I even have to make sure there is plenty to eat because I know I won't be cooking meals. I've had this crash last for a whole month and that was awful.

Even if I can do a thing doesn't mean I should, I always have to think about the effects every action will have on tomorrow.

I think the key in dealing with MG is living a different life. I'm tired of hoping to be "normal" and will settle for being happy.

I guess my point is that I hope for ideas on new ways to live rather than new treatments. I don't like drugs, they always come with side effects. I do know that there are others with more severe MG symptoms and new treatments are always good, it is good to have choices. I'd prefer a list of suggestions like what I learn here in this forum. I thank everyone here, you have helped me cope with MG more than any other person or website.

I am overwhelmed with having MG. It seems silly that each one of us has to reinvent the list of helpful things to do or avoid on our own, but that is how it feels to me. And even when I discover new things that would be helpful it takes so long to get into new habits. Just like walking, I've always been a fast walker and I kept wearing myself out...it has only been recently, after about 1 1/2 years that I have been able to learn to walk slowly. Sounds silly, but it has been an enormous help.

Alice, I love the story. I have to consider "how many lambs I want to sacrifice" before I do any activity.

Okay, what started as a simple response turned into a rant. I appreciate everyone who responed to my post. I hope we can all find ways to live happily with our MG. I do believe it is possible, but it takes a lot of work.