Originally Posted by AnnieB3

Moni, Good, I'm glad you checked that out with your doctor.

Mestinon only helps with symptoms and not the "cause" of the lack of acetycholine; meaning it does not suppress the immune system and the antibodies.

If you had a bad headache and a minor backache, Tylenol may help to get rid of the backache but not all of the headache. It's the same with Mestinon. It may make the more minor weakness better but not more severe weakness. Depending upon what muscles you are using, you can have anywhere from mild to more severe weakness. Crazy, right? And if you take too much of Mestinon, you can have overdose symptoms (increased weakness). That's why some doctors increase the frequency of Mestinon before the dose. Some go back and forth (increase frequency, then dose or vice versa). Everyone is different. And you may need more at certain times, like when you are out in the heat or when you are sick. Those are only two things that can make MG worse.

When muscles get weak they can feel like they are "burning." If you've ever run a long time or been an athlete, you've experienced that feeling. People with MG just get there quicker! Muscles can also cramp and spasm. MG is all about weakness but there are secondary problems that come from weak muscles.

I like how you said your face is "messed up." After I run errands, my face feels like it's going to droop off. I hate it. Fatigable weakness is never normal. They should do a SFEMG (Single Fiber EMG) on you.

Are you on Advair, by any chance. Or Flovent? Since you have allergies, I thought it was worth asking. Steroids can make those blood tests negative, as well as the EMG's!

Any other meds you are on that might interfere with tests?

I hope you get answers soon. If it is MG, it may take awhile to adjust to. Your mind will always want your body to do what it used to! It's harder to adjust mentally than physically, at least for me it is.

Annie

Originally Posted by AnnieB3

Moni, I'm fiercely independent too, so I get the frustration.

One thing I forgot to say is that it's a very good idea to find a pulmonologist and fast. And if you can find one who has "privileges" at the closest hospital, that's great. No one wants to think they could go into a myasthenic crisis but it does happen. And those of us who like to "push" ourselves, are more prone to one.

A pulmonologist can check out your baseline numbers (when you are doing okay) or see how badly you are doing. Neurologists can't do what they do. They are an important part of your MG "team." And they can do tests called MIP and MEP that specifically look at how weak your chest wall muscles are. If you are doing badly, they can do an arterial blood gas on you. And they can explain, if they're good, what can happen if you do go downhill.

Knowing what could happen in MG is not to scare you. It's so you realize what the parameters of this disease are. So you won't push!

Annie

Originally Posted by dog lover

Hi Moni,
Welcome to the group!!! I personally don't have the burning but like a couple of others mentioned I have alot of shakiness. Sometimes I feel like I should be physically trembling from head to toe but it isn't always visible.

Originally Posted by bluesky

I should say that I experience shakiness too. Sometimes my arms will shake for hours after I've overused them. Sometimes they'll just tremble when I try to pick something up. And sometimes I feel shaky inside if I overdo it.

Ally