Hi, CKitty. You'll get a lot of good support here. These guys are great.

First, have you been tested for other things like a B12 deficiency? It's very common in people with autoimmune diseases (pernicious anemia) and for people over age 40 who have begun to lose their stomach acid. Just like we get wrinkles as we grow old and get gray hair, we lose stomach acid too! There are many causes for paresthesias and I hope your doctors did tests to figure out FOR SURE what was causing them.

The problem with MG is that it is NOT predictable! No one here can tell you how you will do with the disease. Resting and taking it easy will make MG less likely to have wide swings in weakness. If you overdo it, it will slam you into your bed really fast!

Working is definitely hard with MG. You can do it but it usually means taking more drugs like you are now.

If you are still not doing well, you have to call your neuro to tell them that. Any changes in MG should prompt a conversation between you and your neuro. And a good neuro will also recommend a good pulmonologist. My pulmonologist is actually the first doctor I go to if I'm worse. She does breathing tests or arterial blood gasses to show if I'm worse or how much worse. Redoing antibody tests are not a reliable indicator of how MG is. And EMG's are really expensive to redo! A clinical exam is good but those breathing tests are a great indicator of things.

I can't have those other nasty MG meds, other than Mestinon, so I have to not work. I absolutely HATE not working. So, if you can work and manage, why not try it? It's up to you if you can do it on a long term basis or not. No one can make that decision but you.

Do you drink coffee? Caffeine is a cholinesterase inhibitor, just like Mestinon. You have to be careful not to have too much of it or you can have an overdose of acetylcholine. But my one cup of coffee in the afternoon really helps. If I go out, no amount of coffee will make me better though. It just kind of gives me an extra boost every day.

I hope you can adjust to living with this silly disease. It's great that your family is pitching in to help. How cool is that?

Annie