Elle, Your post kind of got lost in the other thread!

Did you test positive to a MG antibody? If not, did they test you for LEMS?

It's very important to be tested for LEMS as well, because that disease comes with the risk for small cell lung cancer!

When did your MG symptoms begin? It's possible that your MG hasn't generalized to your legs quite yet, but that doesn't mean that it won't! MG is a "head and down" disease, meaning that it normally begins with symptoms in the eyes/face/head/neck.

Don't assume that you can't crash suddenly after pushing your body the way that you are. It's the "newbies" who often have a MG crisis in the first year because they still don't know how their disease will react to activity, or how much activity.

BTW, Do your feet still turn blue?! Have you addressed that? Maybe you should see a pulmonologist to assess your breathing and O2 saturation.

What else can we help with? Do you have any other questions? There's a lot to learn with MG.


Annie

Hi Annie,
No, my neuro said I'm seronegative MG. He's ordered the Musk test now. At my last visit, I practically begged him for another cause for my symptoms besides MG. He's seems pretty confident with his dx. He also mentioned that if it wasn't MG the mestinon wouldn't help, and it has.

This last week biggest issue every day is my jaw. It aches most of time. Just holding my teeth together & mouth closed, seems to be work. Forget eating anything chewy or hard, a few bits of salad & that's it before completely fatigued. I was having swallowing issues, like there was a rock stuck in my throat all the time but that has improved some. My cheeks just droop and my face looks so sad all the time.

I have CT scan later this week of thymus and hopefully will get the Musk test going. Neuro has given me predinsone to start but was really hoping to avoid it. Just so tired. I keep thinking if I am this tired just sitting at a desk job, what does the future look like?

Thanks for checking on me. Looks like I'm here to stay for awhile.

You can still have Lems and respond to mestinon. Like Annie said, it needs to be ruled out as soon as possible because of the cancer link.
I take mestinon and 3,4 Dap for Lems and sometimes take extra mestinon when I am especially droopy.
Before I got diagnosed with Lems my two neuro's would have bet the farm on an mg diagnosis. I think I may have it along with the Lems because I have symptoms of both and have a hard time sustaining any benefit from treatment.

Elle, Did they do the LEMS blood tests?

If you clench your jaw while sleeping, that can make things worse. You could also use a U-shaped pillow around your neck or a neck brace to help those muscles of the head/neck. The head is really heavy!

Try sipping some cool water in between eating. Or even a cool pack (not too cold) on your neck/jaw.

Don't you "love" having a face that droops? I don't even like going out in public that way.

You take it easy, okay? Don't push yourself.

I hope you will get answers AND treatments soon.

Annie