Hi, Stevee. Welcome!

Did your neuro test for the MG MuSK antibodies, too? AChR antibodies can fluctuate greatly and one negative test doesn't rule out MG. Did they test your AChR modulating antibodies as well?

I'm sorry you've had Bell's 3 times. Has anyone tested your B12 level? Studies have shown that a combination of Pred and B12 helps to heal Bell's more quickly.

I dread having those eye drops, for my MG always gets worse. Does it also take a longer than normal time for your eyes to stop being dilated? Were you in the eye doctor's office when that happened? That's a classic 911 situation! They could've given you Tensilon (short acting cholinesterase inhibitor) to counteract the Atropine in the drops.

Yes, it sounds like MG. Do you have ptosis (toe-sis)? You might not even notice that your eyelids are drooping unless you take photos of them. You might notice it in old photographs. Usually one side droops more than the other and is "dominantly" droopy. When an MGer is doing worse, they both droop equally.

An odd little test is to pull up on the droopier eyelid for a few seconds and then you should begin to see a game of seesaw between your eyelids! It's called "enhanced ptosis" and is indicative of MG.

A neuro-ophthalmologist is the one to see to assess "blurry" vision. I thought I only had blurry vision, but it was double vision. Take your pointer finger at an arm's length distance from your eyes. Bring it slowly towards your eyes. Do you see one or two? If two, close one eye. Does the double vision go away? That's indicative of MG, too. It's called "binocular vision."

Since you're experiencing shortness of breath as well, you should be fully assessed by a pulmonologist! They can do basic PFTs, plus MIP and MEP breathing tests which are more specific to neuromuscular diseases. They're great doctors to have and work with a neurologist when a patient has an MG crisis.

A MG crisis is when you can't swallow, breathe, or move well. AND it's an emergency, in need of dialing 911. You can't know how quickly a crisis will come on or how severe it will get. It sounds as though the eye drops sent you very close to one, if not into one!

10 mg. of Mestinon is very low. Do you tolerate it well? You can ask the neuro if you can up the dose to 30 mg. Make sure you get their okay first. With Mestinon, it's not always more that is better. Sometimes the time between doses needs to be shorter. It might take some time to figure out what is best for you.

It must be hard to have three children and be facing this disease. There's a lot to learn about MG, but it is manageable. Some drugs can make MG worse. Getting too hot will make it much worse, even if it's only getting heated up by chasing after kids!

Having a fan blowing really does help to keep your body temperature down. Sit whenever you can, instead of stand. Taking a nap helps, too, especially after you do any errands or socializing. Socializing uses up a lot of muscle groups at once and can make you much worse.

What else can we help you with? I think the important thing is to get some more help (i.e., pulmonologist). And to tweak your Mestinon with your neuro some more.

Until you have more help, take it easy. And don't feel shy about dialing 911 if you need to!

Annie