Help with Myokymia and BFS

[Goddessofdomesticity]

I was twitching and went to see a Neuro he diagnosed Myokymia. The twitching comes and goes, at the moment it seems bad. I have had a EMG test - all clear. Is Myokympia and BFS the same/similar. I have spent months completely anxious and lost unnecessary weight over the worry and are causing everyone around me a difficult time. I worry all day long. Can anyone help me? The Neuro didnt give me lots of info, other to say its no problem, comes and goes, etc, etc.Help!

 

[beensuggested]

Again sometimes us docs can't help but speak only our own language and forget how to translate into something more understandable. We know what we are talking about and sometimes we just forget that you may not quite totally get it. Favorite story...and true to boot...there was an older man admitted into the CCU and he was in his room while the cardiologists were consulting not even paying attention to the patient. Of course they were using their own language. They were talking about the man's "galloping heart rate". This for the lay person is generally not a good thing. Combined with some other things basically the docs were not expecting the man to make it. At any rate, the patient got well and the docs were amazed. They were talking to the patient at his discharge and basically saying he was a "medical miracle". The patient looked at them and said, how could he not get better when is heart was as healthy as a horse ) (horses gallop...) At any rate this was one of those good things that happen when we forget to speak english and stick with our terminology. Now, for myokymia...this is the technical term for twitching. Nothing more and nothing less. So the neuro diagnosed you with twitching and based on his exam clinically and followed up and confirmed by the EMG means that you twitch. So there you go. Now you can relax!!!Be well Smooches,kit

 

[Goddessofdomesticity]

Thank you so much for your comments. Its so helpful. I feel quite tearful today, and wonder if a clear EMG means its BFS or would something in the EMG confirm that its BFS. I am still a bit confused, and dont know whether to go back to the Neuro. I am sure he will think I am completely mad, but I am thinking that myself at the moment.

 

[beensuggested]

Ok sweetie here is the deal. BFS is a diagnosis of exclusion which means that if we rule out all the nasty stuff with or without an EMG it means that it is not anything other than this whether the doc chooses to call it BFS, no big deal or myokymia. The EMG does not prove BFS. It shows that there are no major issues with the nerve/muscle interface. Even people with not quite normal EMGs do not have nasty stuff it can be tarsal tunnel, carpal tunnel or even some neuropathies associated with degenerative changes of their spine other injuries or just generalized benign issues. You are looking for a definite answer and my dear you have received it. YOUR doc said myokymia, I already explained to you what that is and I AM a doctor. YOUR doc also said no issues with your EMG obviously no issues with your clincial exam and HE/SHE said basically benign. There are no other answers to get, congrats you are fine. You have this condition and nothing more and nothing less. Look at BFS in a Nutshell and then put this away and stop looking for something more. Be well.,Kit

 

[Goddessofdomesticity]

Thanks so much - I dont feel as confused right now - grateful for your comments. I need to learn to live with it- thats the message and its coming through loud and clear. Thanks.

 

[bfhopeful2]

live with it maybe but meds do help. talk to your doc about some meds to releive the symptoms