Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello everyone, I'm Raquel and I'm a 36 year old mother of 3 children.
I was diagnosed with myasthenia Gravis in May 2011 and this has been the hardest thing I've ever had to deal with! I was living in Texas until December, I came home to Michigan! Well my main problem now is I'm always short of breath with any activity. It has recently got a little better so I was taken off of prednisone and put on Imuran. I just want to know is their someone else that has experienced this? I also take Mestinon 90mg about 3x's a day and a timespan at night and receive IVIG for 3 consecutive days once a month. I would really like to start back exercising to relieve some stress
I was diagnosed with myasthenia Gravis in May 2011 and this has been the hardest thing I've ever had to deal with! I was living in Texas until December, I came home to Michigan! Well my main problem now is I'm always short of breath with any activity. It has recently got a little better so I was taken off of prednisone and put on Imuran. I just want to know is their someone else that has experienced this? I also take Mestinon 90mg about 3x's a day and a timespan at night and receive IVIG for 3 consecutive days once a month. I would really like to start back exercising to relieve some stress
Will
Bear!
You can take mestinon up to every 3-4 hous.
Trouble breathing is the MG effecting the ability of your lungs and ability to breathe.
I was on respirator for a couple of weeks....nothin to mess with. Rest rest rest
Ann
My asthma and allergy specialist has referred me to a pulmonologist because my current breathing troubles are not obstructive like with asthma. Sometimes at night it gets worse and feels like the muscles in my upper chest and neck are really slack.
I hope you'll soon be breathing easy.
I think MG pushes me into panting like a dog whenever I do much work. I went through a lot of tests that showed my lungs, heart and so on were all fine--just the MG effect. Even though most of my other symptoms are mostly gone, I still can't do much physical work without huffing and puffing and sweating profusely.
So, like this morning when I went out cutting firewood for the cold winter that starts here in MN and WI tomorrow (10 inches of snow possible in the far NW MN area), I have to do a little, sit a little, and then quit much earlier than I want to.
My auto-CPAP machine helps me breath at night. It makes breathing much easier for me so nights are not a problem.
The benadyl they gave me with my IVIG made my breathing worse. Just something to think watch . Also others have mentioned recently that Timespan does not work so well for some of us.
When I was put on time span my breathing got worse and I had to switch back to 60 mg reg mestinon.
Best of luck,
Jeannie
I was just recently diagnosed with MG after years of fighting. Breathing is my major issue besides the other staff; weakness etc...
I wouldn't try to exercise. Just keep in mind that if you have breathing problems is because you are weak. Besides my neurologist I also have a pulmonologist who encouraged the use of a BIPAP. This truly works on keeping me away from the ER. This might be something you can mention to your doctor.
Take care!
Marcela
I also have 2 big dogs, one is 50 lbs the other is 80 and when I walk them I can feel my lungs giving out-sometimes I have to stop to catch my breath.