AnnieB,

Thanks for sharing the info. I really like the QOL (quality of life) form.

I found it depressing to fill out the MG-QOL, but at the same time it makes me better aware of just how much MG has changed my life. I think I often try to deny just how bad it is. I think it would be helpful to fill out this form occasionally, for myself.

The good news is that after filling out this form and comparing it to what I think I would have marked when I first got MG, I have improved in three areas. My eye troubles are much less. And, mostly due to change of habits, I generally don't have trouble with personal grooming. Thirdly, I have much less trouble walking, I think this is mostly because I have learned to walk more slowly and carefully...I do have trouble if I try to walk fast, I still run into things, trip or lose my balance.

I have thought about this form and I am considering using it to determine which area of my life I need to work on. Some of these issues can be overcome by change of habits. It takes a lot of time to change habits and learn new ways to live. I know I am still overwhelmed with all the issues MG has brought into my life (one of the questions on the form) and thinking about it like this, by breaking the issues down into categories, is helpful.

Today I decided that I am going to come up with my own list using this QOL questionaire as a starting point. I really need to find a way to make my life better. I feel as if I spend every day taking pills and resting, planning my whole life around my MG symptoms. It's miserable. Everything I have worked for all my life is gone, I need new goals, something to look forward to ...

I wish there were better treatments and diagnostic tools...
I think having nicer doctors would be the best improvement of all!