Thanks, Annie. I'm going to pay attention to whether I feel the bulbar weakness after talking a lot. So far I've been getting it every night around 9:00, even if I take Mestinon at 8:00. But since I added the 8:00 dose, I haven't had that short-of-breath feeling I had one night, which scared me.

It's not exactly the swallowing muscle that's weak. It's more like between my nasal passages and the back of the roof of my mouth, if that makes sense. I have post-nasal drip from the Mestinon, I think (makes my eyes water), and moving the gunk (sorry, this is a bit gross) from the back of my nose down my throat--it's that that takes me several tries sometimes. And when I feel that weakness, I also feel a mild water-in-my-nose sensation. So I'm betting that whatever muscle keeps things flowing only in the right direction isn't doing its job.

Anyway, one thing I know for sure is that wearing myself out makes everything worse, so I've been taking it easy.

Well, feeling short of breath (an oxygen-deprived feeling, very mild, but I recognized it from being in labor) was really scary. My poor husband told me later he was checking on me all night. But it's been a few days, so I don't think I'm headed for a crisis, at least not at the moment...

I had a great day today! I wish I knew why. Maybe the weather--sunny but not too hot. I don't know.

Thanks for all your help, Annie. I appreciate what you do for us here. I have gotten it into my head that a good diet will help me, so I tell my husband (who does the shopping now...), bring me vegetables! He comes home with armfuls of the weirdest vegetables he can find: armfuls of collard greens, beet green, swiss chard, asparagus. I eat them with balsamic vinegar. I feel like Rapunzel's mother. Can't hurt, right?

Abby

Abby, it is your "soft palate" that causes the problem in your mouth/throat. You described the location perfectly.

Yes, SUNNY days always make me feel better, too.

Make sure that you sleep on your side or stomach, now. Sleeping on your back is bad for MGers with bulbar symptoms -- it is too hard to "lift" your chest to breathe while you are asleep.

My MG is almost entirely in my swallowing and some droppy eyes. I take 60MG of mestinon 4 times a day, stage them around eating with one at about 7:30 am, then 12:00, 5:00 PM and one when I go to bed. I have tried adjsting the dose (Usually 60MG) but could not really find a good mix so staying with 60x4=240 a day. I have read some comments abut buiding a tolerance for mestinon, but most neuros dismiss this, after all it's just really a bandaid, not a cure. I jut had a Thymectomy, May 13 at Columbia in NYC and have been advised to just keep up with the meds I've been able to deal with.. I only take mestinon. I keep a close watch on my eating, no big steaks or anything like that... try to stay soft and Im getting by. I almost always have a feeling of a lump in my throat, but dealing with it and don't want to upset the apple cart by making any drastics changes yet... really not sure anymore what a normal meal is.