I am so sorry you are going through this. I hope you are not going through this all by yourself. Do you have someone that lives with you that can drive?

Annie, is absolutely right that if you can't swallow and have trouble breathing you should go to the ER. They can admit you, support your respiration and perhaps give you plasmaphoresis which will filter the antibodies from your blood and make you feel better. If you think you are stable enough to stay home, I would call your neuro and tell him how bad it is and ask him what you should do. There is a lot of good coping and management techniques here and on other sites. I was drinking all wrong, I watched a video on the internet about how to swallow with MG and it really helped. You should do as little physical activity as possible until you can get your MG stable. At first, I spent a lot of nights sleeping in the recliner because it was easier to breathe. Try not to go up and down steps if possible. Limit activites raising your arms above your head, such as washing and styling your hair. Eat your meals an hour after your mestinon when your muscles will be the strongest. Eat easy to digest and chew meals. I eat a lot of yogurt and pudding. Chewing is a problem for me, so I eat a lot of caserole type meals made with overcooked vegtables, potatoes and noodles. Thick soups are good too. I have a lot of trouible swallowing carbs, even bread unless it is moist with gravy. I sit in a recliner that supports my neck so it does not get weak. When a muscle group gets really weak, I put a bag of ice on it and it helps. Muscle communicate better with nerves when they are cold. Take cool showers, don't use hot water. Try to keep the house on the cool side. Stay out of the hot sun.

I know this is almost impossible, but try not to worry and fret. Stress just makes this disease so much worse very fast. I will look for some good video and links to post to help you a little later, especially the swallowing one. And rest, rest, rest.

I have been battling MG for a couple years, but I only was definitively diagnosed 6 months ago. It took me a year to learn my limitation and how to accomadate my "new normal". It is a big adjustment that affects my every waking and sleeping moment. But it is manageable once you find the right combination of treatments that work for you.

My thoughts and prayers are with you and your family. If you need to talk, I will check in several times tonight. You have found a very supportive, knowledgeable, kind group to help you through.

You have the strength for this,
kathie