Page 1 of 7

Calling Twitchydoc and Bobajojo - can you reconcile opinion?

PostPosted: February 16th, 2014, 11:54 am
by Scaredlin
Hi, I posted below at "Sorry for being so needy- bulbar redux" and as Rothaar pointed out, we seem to have conflicting opinions on the detection of bulbar on an emg with someone already twitching.

Looks like Twitchydoc says need to have tongue EMG'd while Bobajojo on Mayo advice was told if you are twitching already, the limbs would detect the disease.

Any comments?

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 3:02 pm
by bobajojo
Comments? Its the Mayo Clinic for pete sake. I can only tell you what they told me when I ASKED them to EMG my tongue. I can't speak to Docens comment. I'm not a neurologist. But Docen, can you please be more carefull in how you respond to anxious twitchers? You have a habit of causing even more panic.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 6:49 pm
by MarioMangler
Look, you are missing the forest for the trees here. You aren't even approaching this in a rational manner.

The truth is that it doesn't matter which one of them is right because no one here has bulbar ALS. No one here has anything -close- to bulbar ALS. That is really all you need to care about (and honestly, the only thing that is on topic on this board). If you are that concerned with figuring out the ins and outs of testing for a disease that you clearly and obviously do not have, there are much better places on the internet to debate it other than here.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 7:19 pm
by Scaredlin
I do not mean to debate- honestly, its my newbie anxiety that is stirring this up and do not mean to put seasoned members of the forum at odds. I am talking purely from a place of fear. I imagine with some months of passing time under my belt, I will gain some perspective on this. I agree, rationality has gone out the window and I swore the clean EMG would have put things to rest but for some reason it made it worse. Thanks so much for bringing me back to some common sense - And bobajojo, yeah, I agree- its freakin Mayo for heaven sakes! Im not questioning them. Its gospel and I will cling to that in times of crazy thought. Thanks you saved me an airplane trip myself:))

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 7:31 pm
by veryworried123
Listen to the senior members

They have just about heard it all

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 7:53 pm
by wjjw
veryworried123 wrote:Listen to the senior members

They have just about heard it all

Yes, we have. And although I rarely read posts on here these days, almost every time I do, I just happen to notice TD "tending to cause panic" ... what a coincidence... The only more frequently occurring theme I see is an unfounded bulbar fear. ScaredOne, you've been cleared, get the heck out of here and move on with your life. :idea:


Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 16th, 2014, 11:28 pm
by mommylondon

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 3:00 am
by TwitchyDoc
wjjw: really? Can you show me where I am causing panic? Because I can see at 5 PMs saying how helpful and invaluable help I am...while you only appear to critise with no knowledge or help for newcomers (or maybe I overlooked how helpful you were - let me check current threads..).

For the EMG: No, at Mayo they obviously meant that if this was ALS so advanced to affect the whole body, then it would show up somewhere. But it is impossible for EMG to detect a damage outside the nerve it is investigating - this is the point of the EMG! It is like expecting that an X-ray of hand will show you a fracture in your leg.
There are many ALS patients who present with obvious weakness in bulbar region and their EMG of limbs is clear (actually this topic was discussed here before).
The logic they used at Mayo was simple - if this was ALS, damage in bulbar region would be expected by the time there are widespread fasciculations with tongue involvement.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 7:23 am
by Scaredlin
Ok, translated for me...... twitching in body with clean ALS (paraspinal, cheeks and three limbs) but feeling bulbar worried but no slurring and swallowing issues would tend to= Im okay????????

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 8:17 am
by TwitchyDoc
Yes, if they did 3 limbs, paraspinals + cheeks (also bulbofacial), the chance you would have purely isolated lesion of hypoglossal nerve (tongue inervation) is basically zero. So yes, you are fine but the technical question was whether an EMG of limbs detects damage in bulbar region, which it does not and cannot, it is technically and physiologically impossible. But thanks for putting me in this position again..If you dont believe me, check the criteria for electrophysiological diagnosis of MND.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 6:33 pm
by Scaredlin
TD- Roger that. Totally clear answer. I think it will help a lot of new members. Sorry for putting you on the spot. To Everyone else- back off on TwitchyDoc!!!! :))

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 8:18 pm
by Little Lost
I was actually writing this post when you posted your answer but may as well submit it anyway.

I am not going to ask your motivations for asking the question you did. I am just going to try to answer it as best as I can. I understand some people are at the stage on this journey when they are fact gathering, it is one of those things that some have to do. By providing answers on this forum it may prevent you going to those other sites which is just the worst avenue to go down.

A lot of what I am saying in this post has been said before and probably better but here goes.
So sometimes when I get confused with contrasting info it is easier to go back to basics and build up the layers. It is hard to jump into an academic subject without doing all the background. By doing this I think you will see that Matt and Twitchy Doc are not contradicting each other but are answering 2 different questions.

So the basics
ALS is a terminal illness and because of this there is legally and medically a minimum criteria that must be fulfilled before someone can be diagnosed. The original models used were called El Escorial critereria, and Revised El Escorial Criteria. In the cases of limb onset this model was nearly adequate, however with bulbar onset cases, it was far too stringent. As a result many bulbar patients could not be diagnosed until they were very advanced. In fact some patients died never having reached the full criteria. This had huge implications on the patients lives, most knew they were dying, their neurologists knew without a doubt what they had, but by not fitting the World Health organisation’s official diagnosis, it meant they were denied access to certain drugs ( Rilutek), clinical trials, finance and insurance, and medical pathways. It meant they could not get the support, or funding, and often had to make rushed decisions on important issues such as mechanical ventilation. Additionally in terms of ALS research it was suggested that clinical trials have been mostly unsuccessful because of inclusion of only advanced patients meeting such "tight" criteria. So it became clear the criteria had to be modified especially to aid the earlier diagnosis of bulbar ALS and thus optimise the management of these patients.

So how did they improve the sensitivity without losing specificity of the prior criteria? After researching the issue they realised it was not the clinical signs that was causing the problem (they were clear and typical), it was the LMN evidence on EMG. It was too excluding, and geared up for late stage limb onset disease. Early bulbar onset patients often didn’t have all the required EMG signs especially within the limbs. It wasn’t that bulbar patients DIDN’T have ANY abnormalities in their limbs (as you were suggesting), just in early stages they often just didn’t have enough of the right sort. So out came the new ALS Awaji criteria.

In essence they replaced the need to record fibs and sharp waves in a muscle UNDERGOING degenerative neurological changes, and instead accepted fasciculations as evidence of denervation. Please note this is not meaning a simple fasciculating muscle, the muscle needs to show many other things (i.e. not just fasciculations but the company they keep speech we have all heard). Along with the fasciculation in the same muscle there should also be clear evidence of LMN loss (reduced interferential pattern of full contraction and increased firing rate), and also evidence of reinnervation (motor units of large amplitude and longer duration). The reason they replaced the fibs and sharp waves, is that these findings are harder to record on EMG, and tend to come later when the muscle is already very weak. This may only be a matter of months but due to the aggressiveness of bulbar onset waiting even this short interval can negatively impact quality of life. Without going into details all these changes need to be seen in several widespread locations.

The feedback on this new criteria are still being published but in general bulbar cases can now be diagnosed much earlier, as can limb onset. It has no impact on us with BFS because we don’t have all the other changes and we don’t have UMN signs.

So you asked the question whether an EMG on limbs can detect damage in bulbar region and Twitchy Doc is right in that it cannot. You can’t tell if the attic of a house is damp just because there is dampness in the basement…..but importantly you can make pretty accurate and educated predictions of what you will find there.

The question Matt had answered was completely different and specific to his case. I.e. did he need the tongue done? The mayo being the experts they are, saw that Matt had only FP in limbs and no sign of ALS, and a pretty clean clinical ( which carries as much weight diagnostically as the EMG)... He had had them a while, they were confident in their knowledge (and unlike some neuro are up to date with research) that presentations like his did not need more investigation. Why were they right ….2 reasons. Firstly as you probably know ALS starts focal and disseminates outward. It is like a sequence, so the first area affected that muscle will show the most unstable pathology. Simply put If Matt had had bulbar onset ALS( for example say his tongue muscle was the first thing hit, then by the time the fasciculations were recorded in the limbs( representing an outward spread), then he would have been showing clear problems with swallowing or speaking ( i.e. his tongue would have been done in by then).. Second reason was that if it had been the other way around i.e. Limb onset spreading to bulbar then the limbs would have been showing more than simple fasciculations. (Remember the AA criteria above). He was told there was no need to do the tounge, and they were right. It is like doing a simple calculation things go in sequence example 3 + 3 X 2 = 12 but if we start messing around with the numbers ( the facts) because we want to make them fit our doomsday scenario it simply doesn’t work. 3 + 2 X 3 = 15….same facts but it doesn’t add up to 12 anymore….and the criteria says it must add up to 12. Sorry if I am as clear as mud.

Lastly the other question you may have been asking was “Early on in bulbar onset could the limbs EMG be normal. It doesn’t matter this doesn’t apply to you because you are in Matt’s situation when he went to Mayo. You fasciculate in the limbs, if bulbar onset you should have clear symptoms by now which you don’t so rejoice.

Hope this explains something My PhD is not in neurophysiology but I read pubmed papers of reputable source and some info from various neuros that I can find to bug..

p.s. I n total of 3 EMGs I have had 8 different lower limb muscles, 6 upper limb, tongue and paraspinals done and it doesn’t matter how many places I got stuck I was always sure they have missed something.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 8:21 pm
by Little Lost

Just wanted to add a general note about why I think there is a lot of conflicting facts out there. Since the advent of this forum the whole science and research into fasciculations has moved on quite a bit. I have been reading this forum and twitching for nearly 3 years, and I notice different info filtering through from the earlier days and it can be confusing.

For example FP have been examined and now we know stability and complexity of them exist and that there may be a correlation between waveform and various disease states.

The sequence in which fasciculations appear in ALS has slightly changed ( research articles between 2012 and 2013) and it is documented ( and mentioned here often), that they can come just before clinical weakness in ALS is detected, but there are usually accompanied by other changes at this stage, and as prof cav said UMN signs are present. ( this development worried a lot of people hence the emails to the profs.)

It is also now known that to detect fasciculations in a muscle by needle EMG requires a longer period of observation. The muscle should be at complete rest for at least 90s recording and even up to 3mins. This is another reason for why so many BFS sufferers who have an EMG don’t show FP. Honestly 3 mins per muscle at rest. Before Mills recent paper on this most testers stuck the needle in for approx 30s recording before telling patient to flex, and that is just not enough time.

There are newer ways being tested to be able to examine fasciculation, including scanning programs with ultra sound to cover larger areas of muscle etc. These methods will advance the understanding of fasciculation distribution in healthy subjects and in disease.

One thing that hasn’t changed though is that fasciculations in the absence of any other pathological findings are just that…Fasciculations, Benign Fasciculations.

PPs I have tried to be sensible with the information I pass on, and of course anything I put is my interpretation and open to debate. However kind of like Twitchy Doc I got it in the necklater by 2 peoplefor some of what I wrote about professional footballers, i.e. scaring people that played football.


I tried to rectify this by pooling reassuring and positive information from 5 different journals, but it went unheeded. I did not mean to cause fear, but I won’t and can’t censor everything I post. As I said some people on this forum, especially those in the early stages, need to gather some facts, rather be here …..than there…..the dark side those sites are.

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 17th, 2014, 10:53 pm
by garym
good post little lost......the question of when and where emg's should be conducted has been being debated here forever. The fact, as I know it, is that once a muscle starts fasciculating from mnd, there will be clear evidence that something unusual is at hand....maybe not enough to dx als (though that might be different with the new criteria) but the doc would see suspicious changes on emg. the disease state that induces fascics causes other issues, so once fascics start in a muscle due to als there will be other changes - hence, it's not the fascics but the company they keep. As for duration of needle insertion into the muscles, I can only relate my experiences with emg. I had 3, two of which were performed by neuromuscular specialist. Both of those docs inserted the needle and left it there for several minutes. they would wait and then have me flex and relax. there wasn't any 30 seconds with these guys, but all 3 of my emgs showed fascics and all 3 told me bfs. I suspect that since it has been almost 10 years since these tests were performed that the specialist already new that they needed to "observe" the muscles for longer than just a few seconds. But again, even the doc that didn't observe the muscle very long saw fascics in me so that tells me it can go both ways.

take care,

Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

PostPosted: February 18th, 2014, 12:45 am
by Yuliasir
I agree with Little Lost and garym :),
Little Lost, thanks for cautious and clear explanations of newest findings, maybe you will consider idea to wrtie a sticky post on that to be added to BFS in a Nutshell?

and as a person who never reads medical journals except as for translation tasks :), I would like to say that still no one of new findings did not changed the main paradygm described in BFS in a nutshell: if within reasonable time (which, as far as I understand, still is about 6 month or so) your twitches do not accompany with specific changes on EMG and clinical exam / weakness, then no ALS should be suspected. Criterias of weakness prominency, exact number and quantity of EMG findings etc may be changed and revised, but still none of the most advanced criteria would be applicable to the wast majority of people making this community. And we should really remember that becasue practical life says that huge most of us are not MND patients, at least not in terms of deadly MND.

However the criteria and role of FP may changed, they do not change the fact that even one of the most pesimistically cautious fellows in our community did not developed ALS after 6 years of twitching or so, neither bulbar, nor any other type. We have here fellows twitching for 20+ with high CPK as the gentlemen who just posted yesterday, and he also does not have any weakness etc.

I think for people who are new in BFS, the main question is: WHAT IF NEW FINDINGS IN MEDICINE WOULD LEAD TO REASSESMENT OF MY EMG/DIAGNOSIS? Well, considering that we may do a kind of so called retrospective study by themselves just considering info set above, the answer is most probably NO. becasue our EMG still miss certain key criteria from the newest set, and those criteira are based on the studying of people who still developed significant clinical changes in a relatively short time.

That is why I believe it is IMPORTANT for us BFSers to participate in BFS study initiated by TwitchyDoc. Huge most of us do not develop predicitve indices but we are the background, we make a STUDIED noise line, and the more EMG data would be available about us, the more clear true signals would be detected on our background. People seldom undergo EMG as a regular part of medical examination, you know :) and the more EMG from unaffected people would be available for doctors, the better it would be for possible ALS detection - not necessarily in us, but in other people. maybe we may help to bring some cure for them (becasue our condition is often curable or at least treatable).
It is like they write in ICF: you may not benefit personally from this investigation but we hope it would help other people.