Just wondering how many people..

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Just wondering how many people..

Postby dande5 on June 24th, 2004, 11:38 am

have NOT had an emg and have been satisfied just by the dr. whatever type of dr. you have seen and were told by him/her.?

When someone says they have a 24/7 twitch, do you really twitch constantly without a break?

Is a buzzing sensation of and on, not constant, considered a twitch or twitching? Can't see it either.

My neuro gave me a clean bill by exam and felt emg would be "overkill" in his words. My twitching has decreased which has been pretty much random, except for now I have a buzzing sensation on my inner ankle which my chiro feels is and has always been related to my sciatica flare that I had/have since right b/4 I started to twitch.

Just curious on how many have been satisfied by a dr's word alone and have been able to put this all behind them.

Thanks all.
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Postby amy_twitch on June 24th, 2004, 12:20 pm

I'm not in this boat. But can tell you that I saw two neuros who said the testing was overkill....the second one agreed to do it to give me peace of mind (and for no other reason...there was absolutely NO curiosity on her part how the test would turn out). She even told me "I'll give you your normal results tomorrow"

I've had your buzzing sensation a LOT. Not 100% constant, but there a lot of the time...especially when at rest.

If you have the mental strength to fully trust your docs....then by all trust them.

In hind-sight, I could have done without the test...especially if I would have found this board first. But that's hind sight.

If NOT having the test will cause you any ounce of doubt....then get it done! The ounce of doubt perpetuates anxiety---which is the worst evil of all for everyone on this board.

It all depends on your frame of mind. If you continue to have 'what-if' thoughts...then get the test and rid your mind of any doubt. If you trust your doc and never have another care about it---Power to you!!

The testing is more to relieve anxiety than to confirm BFS.
Just my 2 cents on the matter.
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Hindsight!

Postby SLL on June 24th, 2004, 5:01 pm

I agree....in hindsight, I could have done with trusting them. Both who did my EMGs were so casual about knowing that nothing was going to come up. You could feel it in the room...it was not an exercise of concern for either of them. It was for me, but they were so sure.

I even tried to live with just my MDA/ALS specialist telling me to go home and stop worrying after an in office exam...but I could not - 3 days later I called and requested the EMG. Just could not do with the "what ifs"...even though he said to me in office "I don't need an EMG to convince ME this is benign...but maybe you do" What he also said was that he was afraid of the viscoious circle he sees many patients get into - even after they finally get the EMG, and it is normal, they start to wonder "was it too early?" "did they miss that one little muscle that is dying?" it goes on and on for some folks.

I think a lot of us here have a touch of that - we are diligent, and "perfectionists" and we like knowing. I'll bet not may of us like surprise parties!! BUT that is the way I am and will be...so there! ;-)
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Postby puggriffey on June 24th, 2004, 6:13 pm

I may not be the voice of the majority on this matter, but in my humble opinion, if you're to the point of asking the question on this site, you probably DO NEED the test to erase the anxiety.

I totally agree - the anxiety that flows from that one little lagging ounce of doubt is in many ways harder to deal with/overcome than those full blown, whopper panic/anxiety surges (I say that now, but someone ask me that again when I'm in the middle of my next panic attack, right???). The more and more people I hear and see with these concerns, the more convinced I am that you almost 99.99% need something(s) clinical to "push you over the top". My neuro swears they could do without 9 out of 10 EMG's (even in the questionable cases) and KNOW they are not missing ANYTHING, but he sees the SAME people back in his office time and time again...invariably, he has to do the test.

My 2 cents is - if the door opens, and you can get the test done - don't debate/fight it...get it done, and end the mystery. You'll almost feel guilty when you walk out, and it can feel rather anti-climactic for some, but to me, there's no point in fighting it when it really represents the first true source of "peace of mind" and mental clarity for most who get it done.

Good luck - here's to a speedy recovery for you!

JG
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Postby Nole on June 24th, 2004, 8:55 pm

I saw my GP twice, had blood work and reflexes all checked out, all was fine, I was told I was fine and I have some twitching and maybe I needed to manage stress. Never saw a neuro, never had an emg. I went on with my life and 2 years later I am no worse actually much better, 98% twitch free, working on managing my stress levels and am a self diagnosed BFSer. There is hope, the best thng to do is learn hoe to stop obsessing over the twitches. I know easier said than done, but it does work!
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Postby Arron on June 25th, 2004, 2:19 am

I saw my GP the 5th day of twitching, after I read that twitches are a sign of ALS, and he said he didn't think I had anything wrong with me, and that he had 2 or 3 other patients that twitched all over for no apparent reason. He said they were pretty much normal and healthy, but for some reason they twitched. That's because he didn't know about "BFS", which later-on I made sure he knew about.

To date, I have had no EMG and have not seen a neuro. I'm a big, bad guy, but I'm also a big weenie when it comes to this kind of stuff, so I chickened-out of seeing the neuro :oops:
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Postby ArronToo on June 25th, 2004, 12:05 pm

I've been twitching for six months, but I'm scared to take an EMG.
The doctor hasn't suggested one either. I've got a follow up in the next week, but I'm unsure if I even want one!
Twitching like crazy, and my stress level is off the charts :) , but I think it would be worse if it showed "something" not right than nothing at all...
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Don't be scared of emg

Postby SLL on June 25th, 2004, 1:40 pm

I, too, was...it sounded so horrible and I HATE needles...it was a piece of cake, and I am so glad I got that off my consicence because I firmly believe an in office exam - by someone very experienced in neuromuscular - is a very good indicator of a healthy person vs. something pathological, BUT an EMG just seals the deal. Everything I have seen has said at a minimum the EMG has been at least "inconclusive" in ALS patients - never just clear, clean and totally normal. So when you get a normal you are good to go! Might ease your fears if you are having lingering ones and it really is a big fat nothing in terms of pain.
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Postby puggriffey on June 25th, 2004, 2:42 pm

ArronToo-

That is a BAD idea. If there is one universal truth in the whole arena of anxiety, it is that the method of feeling better by never having to face a bad diagnosis only EXACERBATES your anxiety, and will ultimately overcome you. You cannot erase the doubt this way, and any future twinge or percevied abnormality is going to ressurect fears and anxiousness. Your fear of the unknown has already placed you directly in the flight or fight syndrome of anxiety (deep down, you are fleeing the "bad" test results and are using that to suppress anxiety)...this wears on you, and I suspect you are not similarly equipped to control this long term as someone like Arron is, who is not at all worried that a negative result could develop - just doesn't need the test to confirm what he already knows.

I don't want to pour cold water on things, but to truly overcome this cycle you are in, you have to focus on doing what it takes to get yourself in a place where you are convinced that all is normal and that there is NOTHING to be worried about, including negative test results. I hope you find the courage to confront the infintesimally small liklihood that you might get a negative result, and give yourself the peace of mind that comes from not having the unknown to worry about.

JG
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Postby TheyDon'tBelieveMe on June 26th, 2004, 4:02 am

When someone says they have a 24/7 twitch, do you really twitch constantly without a break?


YES. Although there could be many seconds between twitches, there is always a twitch happening somewhere on me. Some I can feel, others I see but not feel.
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