The reason I posted the truth about MG is so that you won't be scared! There are ways to treat MG so that you don't go into a crisis. The important thing is to make sure you seek out help right away.

I've been in a crisis and I'm still here! So are a lot of others.

Sure, some of the symptoms can be ME. However, fatigable weakness, which is what you are describing IS NOT a symptom of ME or CFS. In MG, the more we do, the weaker we become. We are relatively better with rest (and drugs).

I don't think any patient should assume that new symptoms are from something they already have. Many of us have more than one disease. In my life, for example, I have had MG, celiac disease, B12 deficiency, and asthma from Mestinon (a drug for MG). Other common issues are both a B12 and D deficiency, thyroid issues, metabolic issues, and other common ones such as anemia.

Patients with breathing issues should also see a cardiologist. And been evaluated for apnea by a pulmonologist/sleep doctor.

The two tests for MG that show neuromuscular weakness are MIP (maximum expiratory pressure) and MEP (maximum expiratory pressure). That is how they can differentiate between ME and MG. Do you have a pulmonologist?

When someone can't take a breath in or a breath out well, that is the time to go to the ER. Also, MGers can have swallowing issues and generalized weakness. Those too are reasons to go in. Any one of those three should prompt a trip in (or a call to a neuro when you have one).

Could you have autonomic issues? That's possible. But the fact that you have ptosis and double vision makes me think MG.

I had blurry vision for a long time, thinking that was only my astigmatism. Nope. I was misdiagnosed at age 10 with lazy eye/amblyopia. I've had MG my entire life, and just adapted to any situation.

People can have anywhere from mild to severe MG. The point is to find help and be tested as soon as possible. There's also the MuSK antibody test, and LRP4. So don't let a doctor dismiss you if an antibody test is negative. A good clinical exam, a RNS/EMG/SFEMG, and a Tensilon test can be done.

Anyone know of a good neuro in Canada? I know there are some really good ones there.

Yikes, I would not want to wait that long in an ER. That could kill someone! Does it help if you go by ambulance? If so, do that if you need to!

Some other tests they can do for breathing are an O2 (oximetry), arterial blood gas, and other breathing tests/pulmonary function tests (PFTs). I own an oximeter so that I can gauge how I am doing. I know what my normal is and can compare that when I go out and become worse.

Here's another "test" you can do at home. Take a photo of your face in the morning. Then do what is called an "upward gaze test." Without moving your head, look up with your eyes for about 15 - 20 seconds. Then take another photo. If your eyelids are droopier, that is fatigable muscle weakness. While this is only anecdotal, this is good basic evidence to show a doctor.

Keep a journal of all of your symptoms. Don't try to fit them into categories! Let the doctor do that.

I'm sorry you are alone. That is a scary feeling. But there are people out there, who can help. Social workers, for example. Definitely doctors right away.

Please, don't be scared! There are so many treatment options, and help is a phone call away. But you need to be your best patient advocate and try to figure out what is going on here.

I meditate. That helps so much with staying calm and relaxing muscles. Sleep is the best thing you can do right now (and naps). Extremes of heat and cold can make MG (and some other nerve/muscle diseases) worse. Stress is bad for us too. I'm sure everything will be okay!!! Just make sure your doctors don't leave any stone left unturned! Your instincts are telling you that something else is going on. Trust them!


Annie