I so appreciate the folks on here. Such a comfort in trying times!

No problem :) this place has helped me, I have discovered a lot of little "symptoms" that aren't threatening but bother some since my MG has shown it's self, and it's nice to see that you aren't alone with them! Even if they are something so simple, like a back ache.

Hi, Thomasic. Welcome. Is there another name you'd like us to call you? ;)

If the antibiotics don't work to decrease the swelling, I would highly recommend a consult with a hematologist. Sure, it could be from Mono but don't assume that. I hate to even bring it up, though I'm sure you've thought about it, but cancer can happen in kids too. My best friend had Hodgkin's when she was a teen.

Pain isn't a primary symptom of MG but can be a secondary one. When muscles get weak, they can cramp up, spasm, etc. You can even develop "pain syndromes" from tight areas of weak muscles. It can be necessary to have physical therapy, where they knead the muscles or use ultrasound therapy to help loosen them up.

Has she had a CPK test done? Any other tests looking for any inflammatory conditions?

Kids think they are invincible and can do anything, which is not a good combo with MG. You can't push MG. It'll just keep making her weaker. Have you talked to her teachers about this? Do they know what MG is and what to do if she gets much worse in school (dialing 911 would be the answer!)?

She might have to pace herself more or even be home schooled at some point. Socializing can make MG so much worse and school is all about that! You use a lot of muscle groups while socializing. It's different than just sitting and listening to a lecture. So she needs to understand exactly what MG is, how it can affect any of our 640 skeletal muscles and how she needs to listen to her body and what it's telling her DAILY. MG can change each day and it can change rapidly.

I'm not trying to scare you but this can be a serious disease if not managed well. There are also things that can make MG worse, such as certain drugs, infections (like Mono), surgery, stress, lack of sleep, a bad diet, etc. Extremes of heat (hot environment, fever, etc.) and cold can make MG much worse. The heat of summer can tank MG very quickly.

I hope she'll find the right treatments and way to manage her MG so that she can have a good life! Keep asking questions and get as much info as you can. She should also carry a medical alert card with her and have some kind of medical alert symbol (i.e., bracelet) on every day. I'm sure a teen would LOVE that. :eek: But it's quite necessary.

I forgot to say that having a pulmonologist assess her breathing is a good thing. They can figure out what a baseline is for her and will know how much worse she gets if her breathing is worse. I know you said it's ocular MG but it sure doesn't sound like it. ;)

Hang in there.

Annie

www.myasthenia.org