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...
So my Neuro wants me to have an EMG of my diaphragm and also of my phrenic nerve.The EMG of diaphragm, is a giant needle stuck through your chest and then your zapped. (I have heart issues) The other they go down your esophagus and zap you. (I have Barrett's esophagus) I told her that this is the most barbaric thing I have ever heard of and that I will not do it. So she calmed me down and said to have the blood work done first and we will go from there.
Have any of you gone through these tests before?
The EMG that I first went for of course came back normal, but I was having trouble breathing so they sent me to a Pulmonologist who said my supine PFT was very bad, which makes my diaphragm not work so well. So why would I need to have another test to tell me it's not working so well????? That's when they (I go to Johns Hopkins) said they think I might have MG and I will have to have some more test.
I haven't gotten the blood work back yet because they went away to a conference...of course.
Hopkins just loves to have their students torture people, well know fact. Well I'm done with that and I told her that after the LP.
So if anyone can clarify this I would be eternally grateful. Mary..xoxo
Have any of you gone through these tests before?
The EMG that I first went for of course came back normal, but I was having trouble breathing so they sent me to a Pulmonologist who said my supine PFT was very bad, which makes my diaphragm not work so well. So why would I need to have another test to tell me it's not working so well????? That's when they (I go to Johns Hopkins) said they think I might have MG and I will have to have some more test.
I haven't gotten the blood work back yet because they went away to a conference...of course.
Hopkins just loves to have their students torture people, well know fact. Well I'm done with that and I told her that after the LP.
So if anyone can clarify this I would be eternally grateful. Mary..xoxo
That sounds pretty barbaric, not to mention dangerous, to me, too, and totally unnecessary. Have they done PFTs before and after Mestinon? That would be something to consider if the blood work comes back negative.
Although it is best to do the EMGs and SFEMGs on the weakest muscles (assuming negative blood studies), you don't have to use the weakest muscle for testing if it is the diaphragm, since there is usually some other weak muscle available. The SFEMG is the one considered definitive for MG and I cannot conceptualize how that could be done on the phrenic nerve. Check out preparing for EMG studies in the Links Group (bottom right).
Good luck! b.
There is certainly - another way - to provide further diagnosis.
I think it's time I see a new Neuro, for sure!
By the way what is SFEMG?
Thanks Mary
There will have to be other solutions.
Peace be with you.
TJ
Thanks Mary
~sherry
I had to choose. Johns Hopkins or UVA.. Im glad I choose UVA.
Best of luck with this. It will help to get your labs back too. They tested for MG?
Mary
I am waiting to see a new Dr in 2 weeks, please God give me patience's. Thanks for listening.
Mary