Thanks Joe, I am sorry you are going through this too. Gastro issues are particularly hard when your muscles are already weak and getting to the bathroom becomes an issue.

I have not been able to reduce mestinon. Please do let me know if they find a safe way to do the IVIG for you. The hardest part of this disease is missing the activities I would do with my daughter. I was the mom who always had the kids over, who took my daughter and 5 of her friends on vacation every year and took off once a week in the summer to take them to a water park, amusement park or the beach. That is the part of my life I cannot accept living with out. She is only 15, and I will be losing her to college in a few years and then she will be building a life of her own. This is not how I want her to remember our time together. I was hopeful for IVIG returning some normalcy to my life. Even if I could do some normal things like go to the beach for the day during my good couple of weeks in between IVIG, I think I could live with that. The thought of never being able to do that again is overwhelming.

thanks again and sorry for being so down,
kathie