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...
Respiratory collapse and aspiration are the most serious acute problems we face. Although we are all different and have different medications and progress of our problems, almost all of us seem to have some degree of respiratory compromise.
The links grooup is a good place to go to look up common problems and Bruce has started one regarding our discussion about the single breath test and I have added a link to a publication about outcome with respiratory problems.
When you are new to MG, and sometimes when we should know better, we tend to discount the seriousness of our symptoms. This is true especially if we are undiagnosed, seronegative, or have a neurologist who seems unsure of the seriousness (and sometimes the reality) of our problems.
Please ask your questions here.
Tell us what sort of tests can best pick up problems when you have myasthenia.
Any breathing "exercises" that are helpful.
And a few examples from those who have experienced myasthenic crisis (I will try to find Curt's if he doesn't reply expeditiously) would be helpful as well. What happened that led to the crisis if you know? Or what was done that prevented one?
Thanks, b.
The links grooup is a good place to go to look up common problems and Bruce has started one regarding our discussion about the single breath test and I have added a link to a publication about outcome with respiratory problems.
When you are new to MG, and sometimes when we should know better, we tend to discount the seriousness of our symptoms. This is true especially if we are undiagnosed, seronegative, or have a neurologist who seems unsure of the seriousness (and sometimes the reality) of our problems.
Please ask your questions here.
Tell us what sort of tests can best pick up problems when you have myasthenia.
Any breathing "exercises" that are helpful.
And a few examples from those who have experienced myasthenic crisis (I will try to find Curt's if he doesn't reply expeditiously) would be helpful as well. What happened that led to the crisis if you know? Or what was done that prevented one?
Thanks, b.
I can relate to what you are saying--I am on mestinon 3 hourly but thus far don't have a diagnosis.It's been 2 years now and 4 neuros.All my tests were normal and the SFEMG was repeated.There really is nothing I can do but be patient.If at any time i really get short of breath i shall go to the hospital.
Lorraine