EMG Results - Innocent Stumble?

hey all,

i hate making this post right after my jubuliant clean emg, but i claim innocence on this one. i was simply trying to go back to read JG's experiences with the mayo clinic that he/she (think he?) had mentioned in his nice response to my freakout yesterday pre-emg. i quite innocently stumbled into quite the debate about some random emgs being clean where ultimately people developed ***. the poster stirring it up was "theydon'tbelieve me". anyone remember him/her?

anyway, it seemed as though all these folks he was referring to at another scary website had started with bulbar symtoms, not twitching. apparently the debate stemmed over whether or not individuals with only upper motor neuron symptoms could have a clean emg initially. but twitching is a lower motor symptom right? so this point is moot to all of us twitching right? because if we are twitching, then our LMN is affected which would always result in a "bad" or at least "questionable" emg, correct? i don't want to start myself worrying again over nothing. so if anyone can clarify this for me that would be great!!!!!

thanks in advance!
mel

Good God mel, you said you were leaving and now this...OMG. I know that you are probably just hanging around vying for my attention, well now you have it. I'm almost ready to give you one of my harsher, kick in the pants rants, you don't want that do ya, DO YA!!!!

JG is a he, I know this because we go to the same cross-dressing club , sorry JG but this post calls for desperate and truthful measures.

Basso: Do you notice that since bean counters took over many aspects of the entertainment industry that art has gone down the pooper? I have. They are so utterly concerned with stats, and studies and bottoms..er bottom lines, that they aid and abet the downfall of culture.

mel: Wow Basso, that sounds heavy.

Basso: Yes it is mel. You see, art or even very fine entertainment, can not be pigeon holed into a "break down" of the numbers...it needs the intangible and wonderful element of human creativity; which can not be quantified.

mel: Oh yes I understand that completely Basso...after all, I did play the part of the 3rd spear carrier to the left, in my grade three play.

Basso: That is awesome mel, I hate to do the oneupmanship thing, but I was the second spear carrier, but I digress. Your life also is too large, and mysteriously wonderful to be boxed up into something as eensy weensy as a study, or a bunch of stats.

mel: Cool, like the miracle of my kids being born.

Basso: uh huh, so forget about trying to delineate from numbers the magic that your being alive is. Living, loving, kissing, feeling the dew under bare feet allows us to understand all that is important...it transcends the paltry sciences of man.

mel: Basso?

Bill: Yes?

Basso: Good Lord, not him again. (later Bill, okay?)

mel: Weren't you taking everyone for ice-cream?

17Wildcat17: and pie?

Basso: Yes, I was...am, but how about if we roll a great big fatty first, and put ourselves in the mood...

Hey,Basso I totally agree with you about rolling up a great big fatty.I think most of us just need to chill out a bit myself included

Mel,

I remember that post and yes you have it exactly right.

If the twitching were ALS related it would show up as lower motor neuron damage on an EMG. All those scary stories about EMGs missing ALS miss the critical factor--they did not concern people who twitch (without weakness). The EMG is not an ALS test in a vacuum--it needs to be accompanied by a clinical exam. If someone goes in with some kind of real weakness or other symptoms and has a clean EMG, a responsible neuro would NOT give a benign dx.

The Mayo study standard--in the case of twitching, clean clinical plus clean EMG essentially amount to benign dx--is like testing two entirely different ways for the same disease. That's why it's so thorough. Considering many neuros don't even see a need for an EMG with twitching only, you've got a pretty darn good diagnosing protocol.

EyeoftheWild,

how did you know i was just trying to get your attention i though the mention of pain and pleasure in my happy emg post would do it, but alas, no response so i had to take drastic measures

i know, i know let it go, i'm being riduculous, but it was just that ONE last question, and now that dave was kind enough to reply... thank you dave, that makes perfect sense and is what i thought to be the case, just got lost in some of the crazy dialogue on that thread. whatever happened to that guy anyway?

i still blame JG for that last question! if i hadn't gone looking for his posts on his mayo experience, which i never found anyway, i wouldn't have even found that crazy thread! it all your fault i'm a paranoid freak JG!! i take no personal responsibility whatsoever

anyway, hope all have a good weekend. no need to take me out for icecream EyeoftheWild, i have my own personal pint of ben and jerry's in the freezer just waiting for me. btw, how did you know i was the 3rd spear carrier from the left!?!? ironic, as in a previous life (aka before kids) i actaully did work professionally in the theater. must be my oh-so-dramatic posts that give it away


mel

OK -

1. I think I agree with Basso's first response - only problem is I was so stuck on the "cross-dressing" parallels, that all my eyes caught of the rest of the message was ................ ................... ................... ................. ............

Sort like my mind on a normal day.

2. Mel - right approach, wrong conclusion. Yes, it is ALWAYS a good strategy to disavow responsibility and blame it on me. That gives you a 99.88% chance of being right by default (gosh, I'm a clown a lot of times). That said, I REALLY DON'T KNOW how you are letting your mind skip all over this issue like this. If it is there, an EMG will pick up **S in a symptomatic body - period. It really is quite that simple. The splitting hairs that used to go on during that debate you stumbled onto (P.S.: I told you to go back and read my posts, not extend into others!) is simply irrelevant for those, like yourself, with clean EMG's. If there are fractional numbers of souls who avoided such a conlcusion because of an upper motr this or lower motor that, it is quite simply by some sort of odd combination of REPORTED facts. That the medical community uses the EMG in a symptomatic patient as the "gold standard" of evaluative criteria is perfectly fine for your situation. Case closed. To wit, I am SURE there is some poor soul out there who got hit by lightning once and survived, only to get hit again and have that one be the fatal blow. But trying to waste time figuring out if he died because he was hit by lightning, or if he died because he was a poor sap that represented the .0002% of people hit by lightning that died the second go-around is frankly a waste of time. Until I am hit by lightning, I'm not worrying about it, because I haven't been yet. (although it does look dark outside...hmmm....)

3. Count me in for (in this order) - the pain and pleasure, the pint o' IC (Phish Food - aaarrrrggghhhh), AND the fatty. Oh, this is shaping up to be a great long weekend.

JG

omygod JG you are my long lost twin!!! twitching tongues, phish food (my FAVORITE!!!) and fatties !!

i can't find your mayo clinic story, and because we are long lost twins, i really wanted to read it. how can i find it?

mel

Pugg,

I'd like to respectfully disagree, or at least comment, on the suggestion that an EMG is always going to pick up ALS in a "symptomatic" body. If you mean people with widespread twitching but no weakness, by symptomatic, then I won't take issue with it. But if you're talking about ALS presenting with profound weakness or slurring etc. (without twitching) then that is certainly not the case, it is quite capable of missing things, especially in bulbar onset cases.

The reason I point this out is this--if people who find themselves here simply put their faith in the EMG without understanding why it's the twitching that sets them apart from people with ALS, they will inevitably stumble across some of the many accounts of PALS who originally had negative EMGs and they will freak out and not immediately understand why it has nothing to do with them at all. They just read about false negative EMGs without understanding that widespread twitching is a LMN sign that would show problems on EMG if it were ALS.

Now I'm not totally sure I have this exactly right, but as I understand it, it's possible to have a negative EMG and still have early ALS when, for example, someone has weakness (upper motor neuron signs) but it hasn't progressed to affect the lower motor neurons yet (for example, no twitching). In the case of twitching (only), it would be highly unlikely because the EMG tests for what is symptomatic.

ANYWAY, none of it matters, the Mayo is all that matters. Clean clinical and clean EMG means go have a picnic.

Dave, just one simple question: Has there been muscle twitching during EMG-Exam to say yes or no, I mean if the muscle group has been twitching some time before (e.g. foot and now they are testing the calf-muscle) and during EMG-Exam not is this also revealing? That is for me the absolute key question if I conductlimb- EMG-Exams over and over if e.g. I had some maybe Bulbar-signs!

Thank you you seem to be very skilled regarding this issue!

Astro

I am NOT an exerpt on EMG, far from it... I'm sure there are other people here who know plenty more than I do about it.

To answer your question, it should not matter when the muscle was twitching etc. I would think.

I think they like to get a fascic on the EMG if they can because the benign twitches look different than ALS twitches on EMG, but it's not critical to get them. There are other signs they mostly look for, signs of denervation and reinnervation that aren't tied to twitches. I think most of my EMGs didn't catch any fascics.

astro

what i understand is that it does not matter if a fascic is picked up or not. mine were not, although we could all plainly hear them in my feet during the nerve conduction study. they are looking for "sharps and waves" whatever those are. i think this is why they will only test one side of the body (as in jg's mayo story and my own experience with very thorough emg at emory clinic) they are not "chasing fascics" all over the body, rather looking for these other ominious signs. i think that is why sometimes when they do find fascics on emgs it is no big deal and they are considered benign without these other things being present. correct me if i'm wrong folks!?!?!? i don't know that a benign fascic actually looks different on emg than a "malignant" one. i always thought it was the other factors which suggested denervation, or whatever you call it when muscles are dying. am i right guys?

also dave, i too think that is an important factor to point out the distinction, because those stories on braintalk CAN be scary (not that i go there anymore!!) unless you realize that they are referring to UMN, not LMN signs which are what is relevant for us twitchers.

mel

oh, also astro,

the 6-8-10, whatever, needle pokes they do are quite enough to determine damage without testing every muscle in your body. these pokes are enough to determine nerve damage in different regions of the body. usually they will move the needle around some once inserted too, which i believe also allows them to test different areas with one stick. hope that makes some sense. i'm not articulating it well, 'cause i don't have the terminology. maybe someone else can clarify it more clearly, but hopefully you get the point.

mel

First there might be fibrilations. These are not welcomed.
Then there might be fasics. These might be bad or not.
Third they will make you do some movement to see how the muscle acts. this is the most important part. They can see how the muscle contracts and similar.

Mel dont make the same mistake like me. Be happy. If one has started twitching (like me for example) there might be many things coming you cant even think of at this moment.
Perceived weaknesses -> will through you back
Tongue twitches will make you go crazy
Big thumbers that just dont want to go away and will make you feel tired/weak will bother you
i tell you if you dont let go this will be the next step and then you will go crazy again and will want a new EMG.
You will start reading that an EMG performed early might not detect something malignant and you will start putting yourself in that spot.

"Paragraph Deleted: For the peace of mind of the others"

So dont do this to yourself. Call your provider and cut of the internet. I tell you this is the only way to get straight. Trust me on this.

Edited:

My god i just saw how many posts you have posted in just a few months. Boy this is a bad sign. Even me didnt write that many in the beginning.
Theres only one way out: THROUGH NOW THE LAPTOP DOWN (BRAKE IT) and GET THE HELL OUT.
I tell you this (Worrying, etc.) will not have a positive outcome

Basso i knew that something like this would come from your side. Well you have absolutely right.

The thing i want to say however is that: BFS has flair ups and that it is very important to keep ones thoughts straight when he is in a flair.

The simple reality here is that I COULD - today - post something letting you all know I am an unfortunate victim of **S. This despite my EMG's and confirmations of health, and you would NEVER KNOW whether:

1. I had it, or am just lying for whatever reason

2. My previous accounts of symptoms, what was done, what was said, etc. were factually accurate

3. What my emotion state of being for posting was - am I bitter that the doctors who first saw me didn't "catch" it? Am I trying to feel less alone by creating the premise that 'more people have this than they think"? Am I just so terrified that I need an outlet for my anger, depression and grief?

4. What my medical records, doctors, etc. really found - did I understand what I was being told? Did I process this information appropriately? Did I TELL the doctors everything along the way?

Etc.

You would NEVER know these things. You just can't. Welcome to the internet.

Yet, Alex, you have now chosen to open up this can of worms based on "two stories I know I read", and some speculation on another forum, where you really have NO idea who's on there, why, and what the motivations are. I grant that you are probably trying to help, and you certainly have been very forthcoming about your own pessimistic state of mind about the whole BFS thing, but I think at this point we would all agree that this thread is losing any relative value. I would also respectfully ask you to be considerate of why most, if not all, of the folks on here are here when you post in the future. They are NOT looking for information from other sites with no known source. They generally are NOT looking for perspective on why one does NOT believe the premise of the site itself - from the information posted in the BFS in a nutshell post, to the thousands of posts offering support, first had perspectives, and other reasons to do away with sometimes overwhelming fear. And most importantly, they are NOT looking for a breakdown of the merits of their accounts, and the diagnosis offered. When they are, though tempting, I would hope you would find the compassion to resist offering it up in an "in your face" way that does not promote anything but strings like these.

It is not your fault, per se, that people react the way they do to whomever/whatever is written in any post on here, including yours. You are welcome to speak your mind as you see fit. I simply encourage you to look inside and find a modicum of respect and sensitivity for the perspectives of others, and what their motivations are for being here in the first place.

JG

Perhaps I should better articulate why I think it's best that people know EMGs are not foolproof. And I should preface it by being clear that it has NO BEARING whatsoever on us twitchers and the Mayo study or this forum. I am strictly speaking about ALS cases, without twitching.

There will always be people coming here from an ALS forum freaked out over having discovered EMGs can miss things, because they don't understand that the EMG is only one part of the BFS dx, and perhaps arguably not even the most important part. It's going to keep happening, because EMGs can indeed miss ALS when only UMN signs are present. Long ago I saw a paper showing the percentages of this happening--false negatives--broken down by limb onset distribution. I don't remember figures but for example strictly bulbar onset was quite high. It might have been part of a study I remember questioning whether an EMG was even necessary for dxing bulbar onset. It happens. And again, this has no bearing on us because twitching is a lower motor neuron sign, which is what EMGs test for.

So, as long as we know the argument--that EMGs are not perfect in some narrowly defined ALS cases and as long as we know why that doesn't amount to a hill of beans to us, then we are better prepared to deal with those stories as soon as they appear rather than go through the throes of worrying and debating every time. These stories are not going to go away, they will keep coming. Let's deal with them head-on rather than cowing in fear of even mentioning three silly letters.

I don't think it is support for what you said - he is pointing out that an EMG won't pick up signs of upper motor neuron damage. But twitching, in ***, is a sign of lower motor neuron damage. Which is what the EMG tests for.

In ***, eventually both upper and lower MNs die.

An early EMG in a case where there is only upper MN damage will not necessarily pick anything up.

But that DOES NOT APPLY to us, because we are twitching.

Alex,

If that makes you suspicious, then you might as well chuck 95% of medical dx's out the window because medicine actually knows very little about what causes what. Even cancer for example... they don't really know what causes most or all of it. Naming a condition is of course very important. If they hadn't done that, you wouldn't have a forum to visit.

I think zEarthyRanger is probably closest to what I meant, apart from why it should be brought to this forum.

I am NOT however in favor of confronting things that do not concern us here. I do not think it is beneficial at all to introduce ALS topics that have nothing to do with BFS. Dealing with ALS anxiety, yes, that's clearly related to this condition. But otherwise we should be endeavoring to leave the spectre of ALS in our wake, though of course that will never happen as long as people keep getting BFS and looking on the internet to see what it is.

Personally I'd stay away from all the braintalk forums at the moment, including the "BFS" forum, which seems to have (temporarily?) lost its most knowledgable poster and is now being dominated by someone convinced they have what would be virtually the slowest-onset *** case on record. Someone who is even more dangerous for knowing a good deal about the subject, but lacking the ability to step back and take an overall, rational view.

If you do want to post stories and facts about *** cases it would be as well to set them in context. *** is generally a rapidly-progressing disease; according to the Uni of Washington crib sheet, the average time from initial symptom to diagnosis is around 1 year (and it is a very difficult disease to diagnose - there are almost always strong suspicions for MONTHS before a diagnosis is possible). The average survival after diagnosis is around 2 years. That should give you some idea of how quickly the progression usually takes place.

Alex, you can spend the next 25 years scouring the internet for (rare) slow-onset cases, or for cases of "clean EMG followed by ***". But 25 years is a hell of a lot of life to waste.

No one you find on the internet is going to know anything like as much as a decent neurologist, let alone a really good neuromuscular specialist.

(And ydav3yat3s, I don't know why I started with the "***" business but I'll be damned if I'm using the three letters now. It's like my lucky football socks...)