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,
My fiance has been diagnosed with MG. She was diagnosed 3 years ago. She has had a thymectomy done when she was first diagnosed and is now on IVIG treatments. She has been getting IVIG for about 1 year now (5 day treatments for 5 hours a day) and she has seen little improvement. She is also still on Prednisone and Mestinon. There are times where she feels better and seems to be able to walk better or have more energy. However, it makes it hard to see a lot of improvement because her breathing is not getting any better. It is now harder for her to breath, she chokes when she eats, and when she laughs too much or too hard, it is like her throat closes up on her.
She went to see her Dr to see if there were any options to help her with her breathing. Some tests were done and they told her that her throat muscles were dying and its like she is breathing through a straw.
They told her that one of the only options available to her would be a tracheotomy. I know that this is an extreme procedure but the doctor said it is the only option that will help her breath 100% better.
Has anyone else ever needed this or gone through something similar?
My fiance has been diagnosed with MG. She was diagnosed 3 years ago. She has had a thymectomy done when she was first diagnosed and is now on IVIG treatments. She has been getting IVIG for about 1 year now (5 day treatments for 5 hours a day) and she has seen little improvement. She is also still on Prednisone and Mestinon. There are times where she feels better and seems to be able to walk better or have more energy. However, it makes it hard to see a lot of improvement because her breathing is not getting any better. It is now harder for her to breath, she chokes when she eats, and when she laughs too much or too hard, it is like her throat closes up on her.
She went to see her Dr to see if there were any options to help her with her breathing. Some tests were done and they told her that her throat muscles were dying and its like she is breathing through a straw.
They told her that one of the only options available to her would be a tracheotomy. I know that this is an extreme procedure but the doctor said it is the only option that will help her breath 100% better.
Has anyone else ever needed this or gone through something similar?
DM
Given what the description might have been in the muscles degrading, you may want to ask are they thinking ALS? most likely not as it seems that a MG diagnosis has been made. ALS is one of the differental diagnosis for MG and in ALS muscles can atrophy and essentially die.
Whatever the case may be the goal is maintain a comfortable and safe airway, if that means a tracheostomy, those are quite manageable and I do understand that it is a big change. Overall work with your fiancee's care team to make the best decision possible that will provide for the safest long term outcome. A tracheostomy does not have to be permanent eithier, it can be used until the MG is under better control and then removed at a point its deemed safe to do so.
It sounds like the basic first line treatments have been used, you may want to ask about more direct immunosuppression with medications like Imuran, Cellcept or even Rituxan.
Best of wishes to the both of you and please keep us informed about your fiancee's progress.
Take care and of course feel free to ask anything here.
Joe