New and scared Jaw Jerks HELP please

Information about how to manage or reduce the severity of BFS symptoms

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Re: New and scared Jaw Jerks HELP please

Postby ShawnW on April 13th, 2014, 3:10 am

Red Raider wrote:Even though he did not EMG that ankle he only did the left one?


If the MND expert said you are good...brother you are good. Many of us begin to doubt the exam, neurologist and EMG. If he had seen something that he felt warranted more probes in more limbs, he would have done so. Trust the expert...I mean that's all this guy does. He doesn't make a living by missing MND. Don't go down that road of doubting until they stick you like a pin cushion in every muscle of your body. I know this is a subject of some dispute (at least here), but I know many neurologists and MND specialists who will not even do an EMG unless they see a deficit.
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Re: New and scared Jaw Jerks HELP please

Postby Little Lost on April 14th, 2014, 9:20 am

Shawn is right.

I have had seen 4 MND specialists in various places in the UK. 3 extensive emgs all by neurophysiologist involved in MND/ALS work ups, these including multiple limbs, paraspinals and bulbar but it is never enough. Inside my head I think I am secretly planning yet another emg. It is like taking a happy pill for a few weeks, feeling a bit free from all the anxiety.....slowly then the doubts start to creep in....and back on go those chains....the negative whispers about the emg become shouts ..oh he didnt check this, she missed that, those fasciculations she saw were pathological, they have to be, things have changed now, it was too early, too late, in the wrong locations, unskilled person, the machine bleeped, exception to their rule, something missed, I moved when I should have been still, he didnt do enough locations.......it never stops. Only you can stop it.

Dont be like me hanging about this site 3 years on watching as others move on.

Be stronger than me.
Helen x
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Re: New and scared Jaw Jerks HELP please

Postby ShawnW on April 14th, 2014, 6:08 pm

Little Lost wrote:Shawn is right.

I have had seen 4 MND specialists in various places in the UK. 3 extensive emgs all by neurophysiologist involved in MND/ALS work ups, these including multiple limbs, paraspinals and bulbar but it is never enough. Inside my head I think I am secretly planning yet another emg. It is like taking a happy pill for a few weeks, feeling a bit free from all the anxiety.....slowly then the doubts start to creep in....and back on go those chains....the negative whispers about the emg become shouts ..oh he didnt check this, she missed that, those fasciculations she saw were pathological, they have to be, things have changed now, it was too early, too late, in the wrong locations, unskilled person, the machine bleeped, exception to their rule, something missed, I moved when I should have been still, he didnt do enough locations.......it never stops. Only you can stop it.

Dont be like me hanging about this site 3 years on watching as others move on.

Be stronger than me.
Helen x


Great post Helen.
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Re: New and scared Jaw Jerks HELP please

Postby Red Raider on April 14th, 2014, 8:51 pm

Thank you guys for the post I am going to try my hardest to deal with this and win.
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Re: New and scared Jaw Jerks HELP please

Postby twitchydds on April 15th, 2014, 6:44 am

ShawnW wrote:
Red Raider wrote:Even though he did not EMG that ankle he only did the left one?


If the MND expert said you are good...brother you are good. Many of us begin to doubt the exam, neurologist and EMG. If he had seen something that he felt warranted more probes in more limbs, he would have done so. Trust the expert...I mean that's all this guy does. He doesn't make a living by missing MND. Don't go down that road of doubting until they stick you like a pin cushion in every muscle of your body. I know this is a subject of some dispute (at least here), but I know many neurologists and MND specialists who will not even do an EMG unless they see a deficit.



I was diagnosed with BFS in January after 13 months of twitching. I saw a neurologist at Cleveland Clinic and he wasnt interested in giving me an EMG. I believe him. I agreed.
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Re: New and scared Jaw Jerks HELP please

Postby ShawnW on April 15th, 2014, 5:22 pm

twitchydds wrote:
ShawnW wrote:
Red Raider wrote:Even though he did not EMG that ankle he only did the left one?


If the MND expert said you are good...brother you are good. Many of us begin to doubt the exam, neurologist and EMG. If he had seen something that he felt warranted more probes in more limbs, he would have done so. Trust the expert...I mean that's all this guy does. He doesn't make a living by missing MND. Don't go down that road of doubting until they stick you like a pin cushion in every muscle of your body. I know this is a subject of some dispute (at least here), but I know many neurologists and MND specialists who will not even do an EMG unless they see a deficit.



I was diagnosed with BFS in January after 13 months of twitching. I saw a neurologist at Cleveland Clinic and he wasnt interested in giving me an EMG. I believe him. I agreed.


Exactly. There are many astute experts who don't have to put a name on every twitch and symptom. If they figure it's benign by doing an appropriate history, then why subject someone to an expensive test? I was asked by my attendings after wanting to order certain tests...what are you going to do with the test? Will it change what you do? A good neurologist knows when he/she is looking at ALS based on a good clinical examination.
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Re: New and scared Jaw Jerks HELP please

Postby Red Raider on April 15th, 2014, 5:37 pm

Hey thinks for the reassurance guys. You know how your mind can play games with you. I'm just having some trouble with my right ankle feeling weak and numb and just feeling weird hope it goes away soon. Again thanks for y'all reassurance this is the only way to conquer fears. This forum and the people on it are great and can't say enough great things about them.
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Re: New and scared Jaw Jerks HELP please

Postby Red Raider on June 9th, 2014, 7:18 am

Hey guys not doing so well again I know I sound like a broken record let me update on what's going on and what has happened in the past month. I had my thyroid removed about 3 weeks ago I had hasimotos disease. A little time before that I started twitching in my back, shoulder blades and tricep areas more often than usual. Well it's seems to be getting worse I can feel pain in my right hand and forearm just the right sometimes not all the time but I feel weak and unable to do things like if I say I'm gonna pick something up boom automatically I think weakness in my hand. I wake up every morning and it's there bothering me like my hand doesn't work. I had a Neuro appt my reflexes were a little bit more brisk than last time I don't think that means anything I hope not anyways. I don't know I just have all these symptoms and ALS is creeping back in my head. My triceps feel like they twitch and get swollen up but there not if that makes since. I tire out pretty quickly in my right arm not the left just the right. I hope this is not sinister. I've been in this boat for 6 months I guess I'm in the range of telling if it is going to get bad or if I'm in the clear I hope I'm in the clear. I had a EMG in February and it was clean. Hope it's still good. Thanks for all you guys support I don't know where I would be without you guys.
Are twitches in your shoulder blades more concerning than any other twitches you have in your body? My back and shoulders blades just started not to long ago has me nervous.
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Re: New and scared Jaw Jerks HELP please

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