Hi, Veritas. Welcome to the NT forum!

Do you have an internist? You may want to have some basic testing done, if you haven't already. Basic testing for anyone with a suspected illness that involves weakness are vitamin B12, vitamin D, thyroid, metabolic panel, and CBC.

MG is all about weakness that becomes worse with activity and better (relatively) with rest. You sound as though you have some weakness that fluctuates, or is fatigable. A neurologist can easily order the Acetylcholine Receptor antibody test. There is also the MuSK antibody test, if the AChR one is negative.

I would highly recommend that you keep a journal. Write down what day and what time of day your symptoms occur. Are they worse after an activity? Are they worse after an infection, stress, lack of sleep, or being out in hot weather? Describe what the symptoms feel like, too.

Take a photo of your face first thing in the morning, and then later in the day. Make sure you use the same lighting, head tilt, etc. Even take them in the same exact place. If you see an obvious droop, then you could see a neuro-ophthalmologist for evaluation of the ptosis. If one eyelids is dominantly droopy, pull up on the eyelid for a few seconds. Does the other eyelid droop? That is called "enhanced ptosis" and is indicative of MG.

Put your pointer finger about 14 inches in front of your eyes. Without moving your head, move your finger to the left and to the right. Do you see one finger or two? If you see two, close one eye. If you see one finger after you close one eye, you have double vision. Specifically, that is called binocular double vision. MGers have that type.

You may think what you have is ghosting. Only an N-O can fully evaluate that. I thought I had only blurry vision due to my astigmatism, but it was double vision.

If you are having trouble breathing, you should be evaluated by a pulmonologist. They can do specific breathing tests (MIP and MEP) that can evaluate a cause of the breathing trouble.

If you do have MG, you have to be very careful of what you do. MG can become worse rapidly, especially if it is not adequately treated or during the summer/hot months (opposite in the Southern Hemisphere!). If you can't move, breathe, or swallow well, you should go to the ER. Dial 911 if really bad. When MG patients become worse, they can go into a MG crisis, which can be life-threatening. Don't be scared by that, just be prepared for that as a possibility. Don't overdo or push your body right now.

Please do see your neurologist about MG. Some neuros don't think about MG, because it is not as well known. But once they think about it, they have an "ah-ha" moment. There are other diseases that cause weakness, but only MG, LEMS, and a CMS (congenital myasthenic syndrome) cause fatigable weakness.

I hope you will find some help soon!! You may have more than one thing going on at once, which is not uncommon with those who have an autoimmune disease. Ask as many questions as you need to, okay? The forum has been a bit quiet lately (it's summer!). Take it easy.


Annie