Hi, santhipeace! Welcome. And thank you to Mike who responded to you in Jewel's thread.

If you have MG, fatigable weakness is the primary symptom, but you can have pain as a secondary symptom when muscles get really weak. Muscles can cramp up or spasm when weak.

Are you short of breath? You need to watch out for that symptom! Your back could be weak because your chest wall muscles are weak. When those muscles are weak, you might not be able to breathe in or out well. I'm kind of concerned that you don't have enough treatment right now.

If you can't swallow, can't breathe well, or can't move well, that is the time to dial 911. It doesn't matter if you don't have a diagnosis yet. You could get what is called an "MG crisis," which can be life threatening. Don't get scared or panic! But you need to be aware that, at that point, you NEED to get to a hospital via an ambulance right away. Don't be shy about it, okay? Just bite the bullet and dial 911 if you get that bad.

You probably need more treatment than just Mestinon. Mestinon helps, but it does nothing to address the autoimmune process that is attacking your muscle receptors and making your muscles weak. Some people have to have temporary steroids, long-term steroids (I would not recommend that unless you HAVE to have them), IVIG, plasmapheresis, Cellcept, Imuran, Rituximab, and other drug options.

Do not go out in the heat! If you have MG, it will make you much worse. And rapidly. Stay as cool as you can and try to reduce any activity until you are fully diagnosed and treated.

Please let us know if there's anything else that you need. After you get diagnosed—and treated—you could also go to www.myasthenia.org for more information.

I hope you'll be okay! Let us know how you're doing.


Annie