GOTTA READ THIS ABOUT EMGS - super helpful

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conjecture- an inference from defective evidence

Postby terryg on July 5th, 2004, 10:55 pm

SLL

This is conjecture on my part but when they tested me I had and reported fascics throughout my body. As in your post fascic would not become apparent until damage was already present so by testing just the one side and not finding any damage they would no longer suspect MND.

I apologize for not including this info in my previous post. According to the book it is important not to move the needle while getting the observation which includes the insertion, relaxing, lightly contracting, and fully contracting but after that they can move the tip in different directions and/or depths and reobserve.

Take care
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Postby SLL on July 6th, 2004, 7:14 am

Thanks...that makes sense. Also, on Telemeg they did not say why MND was suspected in these patients...for example, maybe you would do both sides on a patient showing upper motor neuron signs. In our cases, we had normal clinical exams and the emg was done in addition...so when nothing was found on the first side it probably made sense not to "go on".
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Postby puggriffey on July 6th, 2004, 11:53 am

This whole thread is the great risk we all run by trying to specialize in an area we've "studied" under duress for a few days versus dedicating a professional career to it and practicing in front of real, live honest-to-goodness patients.

I know little more than any other average Joe about this area, but I do know the facts of what I've been told from reliable sources in this field versus the unverifiable conjecture:

A properly performed EMG examination does NOT have to be performed in the specific muscle group or area afflicted by motor neuron degeneration to indicate MND or ALS sepcifically. The gold standard (and this is NOT a term thrown around loosley by the medical profession) diagnostic threshold for ALS is that a recognized neuropathy MUST be present in at least 3 of 4 primary nerve groupings for ALS to be considered. Based on every available medical text and verifiable history of ALS patients, this INCLUDES early onset ALS, which STILL VERY MUCH presents in a typical pattern of abnormal EMG findings applied to this neuropathic threshhold. No debate - no ifs ands or buts. So, the manner in which an EMG test is performed, and the number of regions explored, is subject to many other factors than just confirming or ruling out ALS. Based on all that I have been told (and it is only that - second hand knowledge from what I view to be very reliable physician sources), I would agree with the original poster's account from the Yale doctors that most often, anything beyond a complete exploration of 1-2 of the critical nerve regions is usually overkill, intended to offer comfort to the patient or more often, explore and rule out other possible neurological disorders.

I think far too often this site overlooks the vital role other diagnostics play (such as that initial physical exam we all discounted because it felt too arbitrary and "unscientific") in prescribing the course and scope of EMG examination performed by qualified physicians. Very clearly, not all EMG/NCS examinations are identical - they are not intended to be. In many cases, a patient with no pronounced weakness, a lack of verifiable motor impairment, successful physical exam results and no discernable speech impairment DOESN'T need an EMG at all to be properly ruled out of the ALS spectrum, much less a debate on the proper scope of limbs to be tested and regions to be explored. The purpose of the EMG in virtually every full course ALS case, and in the vast majority of suspected early onset instances, is to CONFIRM, NOT FIND. In this regard, it is a possible procedure for an EMG physician to pursue one of many different diagnostic options, including a directional probe of a suspected region (what I believe is being referred to above with the discussion of a doctor "moving the needle around"), which can verify tension and resistance response for a particular group of muscles, or a standard probe of multiple regions (8 to 10 to 12 pokes with limited directional exploration) which is concerned about generalized onset of weakness and nerve degeneration. In any case, any broad inferences about the quality of exam based on number/type of probes is leaving far too many of the tangible variables out of the picture to be reliable, and is probably causing you more stress than benefit.

I'll reiterate what I said in another post on this site, perhaps the most important statement commonly echoed by ALL of my doctors through this experience, from "Joe Neuro" (who we should all have a LOT of faith in still) to physicians at the Mayo Clinic and the Manitoba provincial neurological centers - world recognized specialists in this area. DIAGNOSIS IN THIS AREA (MND/ALS) IS NOT AS MYSTERIOUS AND COMPLICATED AS WE WANT TO MAKE IT OUT TO BE. ALS, because it is a systemic, degenerative disorder of the musculoskeletal system presents in consistent and readily recognized patterns. Because of the correlation of sysmptoms and presentation to the degenration of nerves and cells that cannot be rehabilitated except in remarkably rare instances (i.e.: never, for all intents and purposes), diagnosis does not even reach the level of complexity marked by serious conditions that may regress for periods of time (such as cancer) and/or present in multiple patterns. When you have ALS, you have it, a trained neuro KNOWS it relatively quickly, and the "complicating factors" we all turn up, such as the possibility OUR ALS is not yet fully set in and/or a neuro missed it because he/she was not paying full attention are unfortunately the byproduct of the ingestion of too much incomplete information, from a myriad of incomplete or unreliable sources, interpreted by untrained and sometimes frantic minds. Count me in this group, as I never would have felt the need to travel to these places and/or get a second EMG had I known and trusted then what I do now.

Trust your doctors, resist the urge to scrutinize and "interpret" the means and quality of testing applied to you, and take some time to smile and enjoy your day. Pure numbers and time say you are not afflicted with this terrible disorder.

JG

PS: resist the temptation to get an EMG from someone other than a board certified Neurologist. This will eliminate any last doubt you might reasonably have about the quality of your neurological exam.
Last edited by puggriffey on July 6th, 2004, 2:52 pm, edited 2 times in total.
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Postby Johnny on July 6th, 2004, 2:44 pm

Pug,

That was a very commonsense post. Your point about diagnosing ALS is well taken. I think because the criteria for diagnosing ALS is so strict, we who worry about ALS think the disease is hard to recognize by a trained neurologist.
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misinfo

Postby terryg on July 7th, 2004, 6:43 am

JG

Your post is well written and your points are well taken. I would agree with you that this thread runs a danger and for that matter this site runs a danger, but why does there appear a need for it?

I respect my primary doctor but I get the feeling she does not think my symptoms are any more than the ususal twitches everyone gets. I do not think she thinks bfs is a legitimate diagnosis or syndrome.. My primary neuro told me I have a clean emg but would not say I did not have als or say I have bfs. He told me to watch it for a while and if I felt symptoms worsen or notice any weakness to come back. I have spoken to a neuro who works with ALS patients and knew I had a clean EMG who on one hand said do not worry but on the other hand you have to wait 13 months to be sure. There is another post on this site with a similar comment who sound like a physiatrist but in any case knows a great deal more than I will ever know about EMGs.

What preventing me from freaking out? To be honest there is a little fear. However I am not really worried. This site has helped me a great deal. A great deal of frantic and otherwise research on the web and in the library, and a reduction in my symptoms which may be due to time and/or things I have learned on my own.

Take care
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Postby puggriffey on July 7th, 2004, 8:35 am

Terry-

While time is the best known definitive measure to rule out the possibility of ALS relative to a specific set of symptoms, I believe most neuros would respectfully decline to associate a specific time window (e.g.: 13 months) with such a process, and would certainly confirm that you can rule out the association of ALS with a specific pattern of symptomatic presentation well before that amount of time passes. If probed, I suspect the very same neuro would confirm to you that while definitively ruling out ALS in association with a generalized set of symptoms is never absolute within a certain time period, ruling it out in a specific pattern of symptom presentation within a particular patient in conjunction with properly performed diagnostic procedures IS reliable WELL BEFORE 13 months. I think we need to be careful before putting the people on this site on a 13 month watch unnecessarily.

There is not a single neurological source existing today that can place a 13 month timetable between presentation of muscle spasticity/twitching in conjunction with a normal EMG finding, and ultimate confirmed presentation of an ALS diagnosis. Not a single case even close - even this much I know. So, stopping short of trying to project exactly what your neuro was trying to say, I'd once again remind that context in these discussions is VERY important, and those who have presented with twitching and followed with a clean EMG need not mark off a calendar for 13 months to confirm they do not have ALS.

Smile, and enjoy your day!!

JG
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Hey terry

Postby SLL on July 7th, 2004, 9:17 am

Thanks...I find that comment from Terry's ALS doc so odd. MY doc, the medical director of the Forbes Norris ALS center in San Fran and one of the clinical trial guys and researchers in the country, said emphatically to me that I did not have it based on an in office exam only. After my clean in office exam he said "I don't need an EMG to convince ME, maybe you do, though" and we ordered one. Again, to confirm what he already suspected. So for your doc experienced with ALS to seem so "iffy" after a clean EMG. Maybe it is just physician styel. Some doctors are much more willing to go across the line and say "stop worrying" whereas others always straddle the line.

One other consistency in all "personal patient stories" I have read out there, everyone who had symptoms - even vague ones - raised alarms in their EMGs. Some "inconclusive wait and see , repeat test" but none "totally clean". Then ALS months later.
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Postby Johnny on July 7th, 2004, 2:59 pm

I'm certainly not trying to start a conspiracy theory, but wasn't 13 months the top end of the range in the infamous 6.7% study? If I remember correctly, the time after which persons with ALS who presented with fasciculations to the time other symptoms appeared was approx. 2-13 months with an average of 7. It just seems awful coincidental that the doctor would throw out 13 months as a figure to be sure one didn't have ALS after the start of fascics. I mean, who lives in 13 month increments?
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Postby puggriffey on July 7th, 2004, 3:20 pm

Thank you for providing a perfect example of my point...

Not that we really have to revisit ancient history, but the now "infamous" 6.7% study did not contain a single documented case where symptoms presented initially with fasciculations in conjunction with a clean EMG, only to have ALS present up to 13 months later. In fact, upon review, not a single member of the 6.7% club even HAD a clean EMG, and some had none at all.

I'll reiterate my point again. In this complex area of medical sciences, conjecture and presentation of facts without context can be misleading and/or potentially hurtful to the types of folks who are seeking assistance from this site. I'm no more licensed than the next person on this site, and I'd like to think most of us are as careful as they can be to limit input to facts, personal experiences, or well-founded information relayed from reliably skilled resources. Where this can easily get away, unfortunately, is when information starts getting removed from context, cited incorrectly, and/or misused to draw erroneous conclusions. I'll repeat again what I believe the facts to bear out - there is no timetable that can be applied to this diagnostic pattern, it has never in a single documented pattern of symptomatic and diagnostic analysis presented in a manner consistent with the 13 month timetable associated with this doctor's statements, and it is unnecessary for those on this site who presented with twitching unassociated with clinical weakness as a primary symptom AND have had a clean EMG to begin counting down to 13 months or any similar timetable to be properly excluded from the ALS diagnosis. Any conclusion beyond that is outside of the intended scope of my post.

JG
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Postby Johnny on July 7th, 2004, 4:05 pm

JG,

I can't tell if you are being sarcastic or accusatory with regard to my post about the 6.7% study. Yes, I should have included the very important caveat that none of those 6.7% had a clean EMG. But my point was that 13 months seemed way too coincidental with the top end of that study range. Do you agree?
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Postby puggriffey on July 7th, 2004, 5:02 pm

I agree with both of your points - you should definitely have included the important caveat that none of the 6.7% had a clean EMG, and the 13 months is too coincidental to be ignored. I suspect, like you do, that this neuro used a high-level familiarity with this study to make an overly general comment regarding the 13 months, but since I was not there to hear it and can't say that for sure, that's nothing more than speculation on my part.

What I do know is that if misinterpreted or misunderstood, your earlier post could be used by a panicked and/or anxious reader to dilute or offset what we know to be fact and positive reinforcement for not commiting oneself to a 13 month "sentence" of waiting and anguish. Nothing inflammatory or accusatory intended...just clarification. The history surrounding the 6.7% post on this site makes it clear that clarification and context is very important when discussing the implications of the study - it has triggered more than one panic attack in the past...unnecessarily so, in my humble opinion.

I apologize for any confusion or unintended tone...I hope everyone issmiling and having a wonderful day!!

JG
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Postby Johnny on July 7th, 2004, 5:39 pm

No apologies necessary JG! I just wasn't sure if you were on board with what I was saying. Thanks for clarifying. And BTW, I am definately one of the people who could go into panic mode at the mere mention of a "story" or anecdote pertaining to ALS.
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are you talking to me?

Postby terryg on July 7th, 2004, 8:24 pm

Johnny

You are right about the 13 months. The neuro hedged on a year and I filled in the 13 months figuring that was what was meant. JL is probably right also in his?her anaylsis. I probably misunderstood the context.

Take care
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Postby Arron on July 12th, 2004, 10:30 pm

I have to chime-in here and ask everyone to just put a stop to bringing-up the bogus/ biased "6.7% ALS study" crap again. Puggriffey said it SO perfectly and it shows the total lack of ACCURACY that so called 6.7% study proclaimed when puggriffey said "the now "infamous" 6.7% study did not contain a single documented case where symptoms presented initially with fasciculations in conjunction with a clean EMG, only to have ALS present up to 13 months later. In fact, upon review, not a single member of the 6.7% club even HAD a clean EMG, and some had none at all."

That is it in a nutshell, so quit uncovering a dead horse and beating it again... It's dead already... let it ROT!

If you had a clean EMG already, and you still think you need to go around re-stating what that study FORGOT to mention (see puggrriffey's quote above) when it said that in some people it took up to 13 months for symptoms to "show-up", or that some people "appeared" to present with twitches only, then you are just wallowing in your own crud and CREATING anxiety and MISERY for not only yourself, but many other's that might not have had the misfortune of reading such a crappy report as the "6.7%" study.

It is a FACT that the 6.7% study did not contain a single documented case where symptoms presented initially with fasciculations in conjunction with a clean EMG, only to have ALS present up to 13 months later. In fact, upon review, not a single member of the 6.7% club even HAD a clean EMG, and some had none at all." so why is it even in question here again?
What part of that do some of you not understand? Please let me know and I will try to explain in for you.

There is NO SUCH THING as a person that "presented with twitches only" that had a clean EMG, OR a person that took 13 months to "present" with symptoms... PERIOD!

It gets REALLY old having to get private messages from people on a daily basis who are scared to death that they might indeed have ALS because they haven't had their symptoms for longer than 13 months yet, yet they have had a clean EMG, and several of them have had several clean EMG's, simply because someone decided to bring-up some out of context data from some study that should have been pulled from the data books and never released in the first place.

Some of you are doing a terrible dis-service by quoting out of context "data" from a study that left out VERY IMPORTANT details of it's conclusions when newbies read that stuff. This is a site for people to get RE-ASSURANCE and COMFORT, not scared even more from someone posting crap from some lame study! :twisted: Yes it *beep* me off! I WILL stop threads that have bogus crap posted in them from that "6.7%" study. There is no reason for bogus, misleading, out of context info to be posted on thsi board that other's might read and freak-out over. If you HAVE to quote a study or some data facts, make sure it was an ACCURATE and CONCLUSIVE study. That 6.7% study was nothing of the sort. Time and time again, we have beat this dead horse over and over again and frankly, I am getting tired of it.
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