Hi, Jellyfish. I know that people with muscle twitches/fasciculations immediately think of ALS. Who wouldn't? It would be a very scary diagnosis to have. But the truth is that most of them are benign or caused by other NM diseases or things like electrolyte disturbances.

Have your doctors done other tests like a chem panel or thyroid panel? Did they run the MG antibodies? You don't have to even be a neuro, let alone an experienced one, to have those done!

ALS does have fairly constant weakness. The tests they ran are not specific for ALS - no test really is - though there are more specific tests. I hope they will do all the MG tests for you, which include: Acetylcholine antibody panel (binding, modulating and blocking antibodies), MuSK antibodies, RNS (repetitive nerve stimulation test) and an EMG or Single Fiber EMG.

Do you have droopy eyelids or eyebrows? That is often one of the first signs of MG. You may not even notice it. Look at your eyes in the morning. You could even take a photo of them. Then do what's called the upward gaze test where you look up with your eyes towards the ceiling, keeping your head still. Then look at your eyes again. Any drooping?

Other things that you can do to test if your muscle weakness is "fatigable" (gets worse with activity) is to walk up and down a stair, like the stair stepping exercise. One foot up, then the other and then one foot down, then the other. Or hold your arms out in front of you and see if they get progressively weaker. One doctor I had gave me water to drink and told me to keep taking one sip at a time. That was very revealing! But I wouldn't recommend doing that one since making your swallowing muscles weaker is NOT a good idea.

Do you get worse after activity? Being out in the heat? Those make MG worse. MG is all about weakness that gets worse after exertion or repetitive activity. Some people do get muscle twitches. When I've overdone it, my upper arms will twitch. So it is related to MG too.

It's hard waiting to find out what's going on with your health. Excruciating really. When do you see the "expert?" I hope it's soon. In the meantime, just in case it's MG, stay out of the heat and take it easy. Any signs of shortness of breath that is really bad or inability to swallow means going to the ER right away. There they can do breathing tests or arterial blood gases to see what is going on with your breathing.

Until you know, just relax. Try to do something to get your mind off it all.

Annie