Hi. I remember how scary it was to first think I had this disease. But the more I learned, talked to others with the disease and found a neurologist who was excellent and kind, the less fearful I was. MG can be a life-threatening disease but you can do a LOT to help yourself, along with your doctors.

I'm glad you found a doctor who took you seriously. It sounds like he was very thorough.

Not everyone has Acetylcholine Receptor Antibodies (binding, blocking and modulating), which is probably the blood test he is running. Some people have the MusK antibodies and some don't have any (or they haven't found more antibodies yet).

A neurologist will probably want to do some kind of EMG (needle test) on your muscles.

read up. Being well-informed will really help. Things like lack of sleep, stress, infections, etc. can make MG worse. Some drugs can too. Heat can make MG lots worse, so staying cool is important.

I'm not going to kid you. MG can be very serious. It's different for everyone. Drugs can help but how you manage your day and activities can help just as much. Like doing things when it's cool outside and not doing too much at once. Don't push yourself when you are feeling weaker. Always communicate with your neurologist (or pulmonologist) if you are doing worse.

If you have MG, you really need a pulmonologist. My pulmy is the one who monitors my breathing. If I'm worse, she checks my pulmonary function, especially what's called MIP and MEP. They can show if your chest wall muscles are getting weaker. So it's good to find a good pulmy and have baseline readings done. They are often the ones who monitor how you are doing in the hospital during what's called an MG crisis, along with the neurologist.

Not everyone gets an MG crisis!!! It's when your breathing or swallowing or generalized weakness gets to the point of needing assistance like oxygen, Bi-Pap or Intubation. Don't let that scare you!!! I've only had one MG crisis (though many "near" ones) and there are many things that can be done for you, like Erin said.

I hope I'm not being too overwhelming. You don't even know for 100% certain that you have MG yet. At least for me, knowing as much as I could about MG was actually reassuring. I hope you do get answers soon and then get a VERY GOOD neurologist to help you!


Hi Annie,
I took 16mg of prednisone on Monday March 22, 8Mg of prednisone on Tuesday March 23, 2009, and 4mg on Wednesday March 24, 2009., I am getting my blood work tomorrow April 2, So I think I should be fine and the prednisone should not be a problem., what do you think? You are not being overwhelming I need to know things., it was amazing to me that the opthamologist made the diagnosis and ordered the blood work, and he says depending on the confirmation., I will then have to go to a neurologist.