Hi, Rechelief. Welcome to the forum!

There are other MG antibodies. There are the AChR, MuSK, and LRP4 antibodies. Testing negative for antibodies does not mean that you don't have MG.

If you have blurred vision, more than likely you have ptosis/droopy eyelids. A neuro-ophthalmologist can do specific eye tests that show if you have double vision (which can be misinterpreted as blurry vision) and droopy/fatigable eye muscles.

Have you taken photos of your face? If you take a pic when you are relatively okay and then one when you are worse, chances are that you'll see a difference in the photos.

If you can find a MG expert, that would be smart. Before other drugs are given to you, that might make the signs of MG disappear, it's good to see an expert to make sure of the diagnosis. Regular neuros sometimes don't know enough about MG to make a definitive diagnosis. You probably have MG. But having an expert look at the diagnosis and answer questions for you is very helpful!

MG is pretty unique due to the fact that muscles "fatigue." The muscles become weaker the more we do and relatively better with rest (and drugs). The only other diseases that do that are LEMS (Lambert-Eaton Myasthenic Syndrome) and a CMS (not an autoimmune disease but a genetic one). They all affect how much acetylcholine is making it to the muscles.

Yeah, those EMGs can be pretty much like torture! But you survived! The Single Fiber EMG is another test that they do.

If you live where weather is warmer, please be careful. Heat from weather, exercising, or a fever can make MG rapidly worse. Stress, lack of sleep, surgery, and many other things such as the wrong drugs can make MG worse. If you need more info, you can go to Home for more specifics.

I don't want to scare you, but if you do get to the point of not being able to move, breathe, or swallow well, that's the time to be in an ER. Dialing 911 is preferable. Some people with MG have a "MG crisis," where the situation becomes life-threatening. Many people have had a crisis and have been fine (because they sought out care right away). So don't be too alarmed. Just be prepared for that "what if."

You'll also need a good pulmonologist. Neurologists and pulmonologists work together in a hospital setting to care for MG patients. Having breathing tests will help to determine what your baseline (good breathing) is and how much worse things are if you tank. A pulmonologist can also assess how things are going if you are worse but not seriously bad. Neuros can't do that (breathing tests, arterial blood gases).

What else do you need?

There is a lot to know about MG. Take some time to adjust to this reality. But first, try to see an expert.

Doctors have an algorithm for treating MG that might not be right for you. They tend to throw Prednisone at patients right away, instead of other treatments. The problem with steroids is that they come with a catalog of side effects. Only you can decide what treatment plan is right for you. Just do some research first. Although, if you are doing poorly, you may need something soon. Some experts are now recommending steroids only for when patients have a crisis. IVIG and plasmapheresis are also used.

This is a lot to take in! I can tell you that I've had MG my entire life (only diagnosed at 41), and I'm still here! No one can predict how the course of a disease will go for each person though. Please seek out an expert to help you!

Annie