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...
This is a pretty good video on MG. This rather animated and motivated fellow does a pretty good job of explaining the basics of MG. He however does not do a good job describing Myasthenic Crisis or the threat of death due the inability to breath.
My biggest fear is that this is all of the information that the majority of the health care workers that we come into contact with get. They have seen a presentation like this and now know about MG. Those of us living it know that this merely describes the upper portion of the iceberg. The other 90% is underwater and unseen like us.
http://www.youtube.com/watch?v=gblvFSR956U
My biggest fear is that this is all of the information that the majority of the health care workers that we come into contact with get. They have seen a presentation like this and now know about MG. Those of us living it know that this merely describes the upper portion of the iceberg. The other 90% is underwater and unseen like us.
http://www.youtube.com/watch?v=gblvFSR956U
Doesn't mention cellcept or methotrexate as treatments. Doesn't give the reason why prednisone is used first (it is quicker to work than the other drugs).
I think he makes fun of folks with MG with his dramatizations.
He is very dogmatic in treatments--doesn't really say more than
-- Mestinon first; automatic thymectomy if you are under 60; treatment with steroids is bad but we do it anyway but shouldn't.
He might have explained that prednisone is used first as it is the fastest to bring MG into remission and the alternatives are either given at the same time or introduced later.
Thymectomy is still unproven for treatment when the thymus is normal. The Myasthenia Gravis Foundation says removing a normal thymus: "A thymectomy is not used to treat active disease but rather it is believed to improve long-term outcome. This may not be seen for one-two years or more." Research to see if this is true is underway.
Did I learn anything? Yes--that medical people must be pretty ignorant about MG if this is aimed for them, and that they are still pretty ignorant after the lecture! Of course since many of us have experienced great ignorance on the part of medical folks first hand, maybe this is the extent of MG education for them.
If you look at his other videos he must be some sort of med school professor. And your points are exactly my reason for concern. I believe this is the extent of teaching that most medical personnel receive. It partially explains why we are treated the way we are.
Kimber