Welcome. Do you have an informal name we could call you by?

I'm sorry you have gone through so much so young. MG can be a tough disease but it is manageable. The key to it is maintenance. By that I mean that if you keep it under control, with both medications and by not doing too much, you will be better. It sounds to me that you were already really bad by the time you got diagnosed and, therefore, it may take you a while to recover. It's kind of like the worse you get the longer it takes to get better.

You almost sound like you are close to what is called a myasthenic crisis. It's when you either can't swallow or breathe in or out well (or at all) and have generalized weakness. If you feel like you are that bad off, just like Debra said, you need to call 911 or go to the ER. If it's really bad, call 911. You can't often tell how fast or how bad MG will get.

Are you from a country other than the U.S.? Sometimes that helps to know because health care systems are different around the world.

Some antibiotics can make MG worse. So can an infection or stress and lots of other things. Heat is the number one cause of MG getting worse. DO NOT go out in the heat right now. Stay as cool as you can every day. Not cold, but comfortably coolish.

There's something called an incentive spirometer which some people with MG use when they have a lung infection. It can also make you worse if you use it when you're really bad since MG gets worse with exertion or repetitive activity! A pulmonologist should know about this. Being able to take a full breath in is important. I have had minor atelectasis due to my MG. Don't panic! It's not like the type of lung collapse you see on TV shows. It's a minor collapse of the lung. They can check that with a chest x-ray.

To me, and I'm not a doctor either, it sounds like you need more meds right now. IVIG or plasmapheresis in a hospital setting. You have to take this seriously. You are not breathing well at night. Your pulmy can do an overnight oximetry to see what your O2 saturation is while you sleep. They should've done that already. Have they done an arterial blood gas on you?

Someone with MG can get temporarily worse once Pred is started. When did you start taking it? Did they tell you to take vitamin D and calcium while on it? Flax or fish oil? Are you on anything else?

I think your immediate concern should be really assessing your strength, like the breathing and swallowing and generalized strength of muscles, and get to know when you are bad off. That IS the point where you need an ER. A neuro in an office can't help you, though you can ask the ER to call them. Don't wait if you are that bad. It's not worth risking your life and they may be able to give you more treatments to get you back to your "normal." That's funny to say because you now have a new normal.

People do get better but you need help to do that. You also need to rethink how you do everything, like sitting instead of standing, taking naps, etc. It's a total life makeover really. Get the paper plates so you don't have to do as many dishes, etc. Have a fan blowing on you while you do things to stay cool. Think of it as your own medical action plan.

BTW, you don't have to have a rash to have lupus! An ANA is not a specific test for any disease. Did they run the MG antibodies for you? If not, they should have.

When you feel better, come on back and you can get more info from everyone here. They are great. Abby is being kind but everyone here has something to offer.

I hope you will find the treatments it takes to get better. Again, if you get worse, go in right away!!!

Annie