Can we call you Kelly?

What you describe sounds exactly like fatigable muscle weakness, the hallmark of MG.

Do you know where they sent your AChR antibody labs? There is a difference in labs. Most doctors send it off to Mayo, who invented the test.

Antibody tests can fluctuate greatly. And severity of the disease is not necessarily reflected by what those numbers are.

What did the neuro say about your clinical exam? Were they able to fatigue your muscles?

Can you have slight ptosis and not really notice? Uh, yeah. I had MG my entire life (misdiagnosed with lazy eye when I was 10). I didn't even notice I had ptosis until 2000.

Try to take photographs of your face (same lighting, head tilt, location) in the morning when you're better and then later in the day. The pics I took before my MG crisis of my face and the ones I took after having steroids made it look as though I'd had a face lift!

Okay, enough with the "I think I'm crazy" nonsense! We all know when there are abnormal changes in our body!! And the fluctuation in your hormones from having kids can both make MG worse and better, so that makes sense that it would change like that.

Have they mentioned doing a SFEMG? Just make sure you have a diagnosis before they throw immune suppressing drugs at you. Why? Because those drugs make the signs of the disease go away and, therefore, a diagnosis becomes impossible to do.

I'd ask them to redo the AChR antibody test and send it off to Mayo.

Get a copy of your medical records, if you haven't already.

Start writing down your symptoms and when they occur.

Are you short of breath? You can see a pulmonologist to evaluate your breathing. Ask them to do MIP and MEP to see how well you are breathing in and out, for those are tests specific to neuromuscular diseases.

You can go see a neuro-ophthalmologist to see if they can fatigue your eyelids and to check for double vision. Can you tell if you have double vision? Take your pointer finger and put it about 15 inches away from your face. Slowly move it back and forth in front of your field of vision, keeping your head still. Does the one finger ever turn into two? If you close one eye, does it go away?

MG double vision is called "binocular," and closing one eye will make it go away. Why? Because when eyelid muscles are weak, they focus vision differently.

There are a lot of different ways to assess MG. They need to be thorough! If you have MG, it can be life-threatening, especially when you aren't on drugs yet. So, please, don't push yourself. I know, not easy when you have kids.

If you get worse, you really need to go to the hospital—diagnosis or not.

What else can we help with?

MG can be rough, but it's treatable and you can live a good life with it. Try not to get stressed out. It sounds as though your docs are doing a good job, so work with them on getting an answer (which it sounds like you are already).

I hope you get diagnosed soon!

Annie