Hi, Jewel. Welcome!

Do you have any vascular involvement with your lupus? Did they check you for any of the clotting disorders sometimes involved with lupus? Do you have a good rheumatologist?

Lupus truly sucks, and since it can affect nearly any part of the body, it tends to "surprise" you, even if you've had it a long time.

MG is often called a "head and down" disease, meaning that weakness often begins in the muscles of the head and neck.

I had trouble chewing food, where my jaw would be weak. My throat/tongue bothered me, too. There was obvious ptosis of both the eyelid and eyebrows. I made gasping noises when I was sleeping that would wake me up. I had episodes of choking, not necessarily while eating or drinking. I also had generalized weakness and shortness of breath.

MG affects the skeletal muscles. They become weaker with activity, but you can also have a baseline weakness that is less than what a normal strength would be. It becomes relatively better with rest or sleep and drugs.

Your internist or a neurologist can do the AChR antibody test and the MuSK antibody test. They can do a clinical exam to test for fatigable weakness.

You could see a neuro-ophthalmologist who can check the MUSCLES of your eyes, not only your sight and optic nerve (which I suspect is what your eye doctor did). They can do MG-specific eye tests, checking for double vision, etc.

When muscles become weak, they can hurt. although pain is not a primary symptom of MG. I remember laughing in a meeting at work and the back of my head and neck were in such cramped up pain! I didn't even realize yet that I had MG. MG is a disease whose symptoms can be easily dismissed as working too hard or whatever. And pain can be a secondary symptom, especially if it isn't treated.

The best thing to do is to be tested. A neuro can also do a RNS or EMG or Single Fiber EMG on your muscles if MG is suspected.

Don't worry too much in the meantime. If you do get weaker, then seek out help right away. If you become short of breath, can't swallow, or can't move due to weakness, then you should go to the ER (or dial 911).

You should also know that if you do have MG, heat will make you worse. So stay out of the hot weather until you figure out what is going on, okay?

I hope you get answers soon. If you have more questions, fire away!

Annie