Calling Twitchydoc and Bobajojo - can you reconcile opinion?

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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 24th, 2014, 10:19 am

ShawnW wrote:Well stated. Let me take you all behind the curtain a bit, so we can all become as jaded as myself. :D Institutions are built around researchers...specifically celebrity researchers. Those who's names are known by virtually everyone in the field. They bring in money. They bring reputation. But, it's a fickle environment, a what have you done for me lately field. Researchers are competing for the same money. Researchers are only as good as their last study. They fight for relevance, even those with significant reputation. There is much politics as well. Does Mayo really want to buck one of the leading researcher in MND? Is that a battle they want to fight? Maybe...maybe not depending on the political environment and if they believe the evidence will significantly change the face of medicine.


Shawn, thanks for the insight you bring to this subject. It is always interesting to get "insider" information from people who are actually in the field. I have a few close friends who are PhD's and are constantly fighting the need to be published so as not to lose their funding. Lets face it, not many research dollars go to the guys that routinely report findings that concur with the commonly accepted clinical knowledge of any particular condition....nor does the glory many of these folks are seeking. If a research paper can make a big splash by finding the "needle in the haystack", it is golden for the research team and the institute that is supporting them and I think that anytime money is involved in something it can have a corrupting influence. Now I'm not saying these folks are corrupt, but rather they are almost forced to find the exception.

Thanks again for the input.

Gary
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 24th, 2014, 10:28 am

Little Lost wrote:So here goes….I will probably be thrown off the board for this, but this is THE ARTICLE that is causing problems and has demonised others.


nah, you will not be thrown off the board for this.....i for one appreciate you taking the time to post it. only through thorough examination, which i haven't done yet, of this information can we fully understand the impact on our community. I would much rather have the full information out there than have people dropping half truths or innuendo about some "study" that makes all of our collective knowledge useless. I have to confess to just scanning the info just now, but it looks to me like you are doing a dang good job of not spreading fear about this. Me and my pm box thank you for that :D

take care,
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby ShawnW on February 24th, 2014, 10:38 am

garym wrote:
ShawnW wrote:Well stated. Let me take you all behind the curtain a bit, so we can all become as jaded as myself. :D Institutions are built around researchers...specifically celebrity researchers. Those who's names are known by virtually everyone in the field. They bring in money. They bring reputation. But, it's a fickle environment, a what have you done for me lately field. Researchers are competing for the same money. Researchers are only as good as their last study. They fight for relevance, even those with significant reputation. There is much politics as well. Does Mayo really want to buck one of the leading researcher in MND? Is that a battle they want to fight? Maybe...maybe not depending on the political environment and if they believe the evidence will significantly change the face of medicine.


Shawn, thanks for the insight you bring to this subject. It is always interesting to get "insider" information from people who are actually in the field. I have a few close friends who are PhD's and are constantly fighting the need to be published so as not to lose their funding. Lets face it, not many research dollars go to the guys that routinely report findings that concur with the commonly accepted clinical knowledge of any particular condition....nor does the glory many of these folks are seeking. If a research paper can make a big splash by finding the "needle in the haystack", it is golden for the research team and the institute that is supporting them and I think that anytime money is involved in something it can have a corrupting influence. Now I'm not saying these folks are corrupt, but rather they are almost forced to find the exception.

Thanks again for the input.

Gary



Ding DIng we have a winner. And absolutely no problem. I came here looking for support and information about a subject which most doc know little to nothing about. This site is a tremendous resource. It's even handed and fair, with an eye not to induce panic amongst those with health related anxiety. I love supporting it any way I can because it helped me stay sane during a really difficult time in my life.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 24th, 2014, 10:47 am

OK Little Lost, I just thoroughly read your post and the docs response, and you are correct, nothing there scares me. It shouldn't have any effect on anyone here either unless their neuro suspects MND. Goes along with what my neuromuscular specialist told me 10 years ago, that my fascics were different than the ones he sees in als....he actually described to me/showed me the difference while the emg was going, of course back then I didn't have any idea what he was talking about. I was just glad he was saying no als.

So to summarize to all the other members here, if you have als, your remaining healthy muscles might fasciculate before showing signs of other changes......if you have been told by a qualified neuro that you have benign fascics, then you don't fit into this category....the guy writing the study confirmed that he had never been wrong in that regard....nothing more to see here folks, just the shadow of a mouse :D .....move along.

take care,
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby ShawnW on February 24th, 2014, 11:07 am

Little Lost wrote:I think we may be talking about different studies here. Many here are referring to the papers involving rare case, i.e. investigating the INITIAL presenting symptoms of ALS patients (6.7% fasciculation study). I was talking about the 2013 research paper (the one I wrote the emails about), which documented the sequence in which fasciculations appeared of EMG changes in muscles of ALS suffers.

If you are prepared to read this post right through then it is NOT scary and is safe to read. If you jump out half way through or skim read then it might not work for you and you may end up catastrtophising using my words. If you are prepared to fully read then I promise it offers reassurance about what at first glance seems a really scary paper.

This post is not about THOSE ODD RARE CASES, it is a 2013 factual in-depth study looking at the sequence of physiological changes that occur in healthy muscle as effects of ALS take hold. It is by Prof Carv and Swash, but emulates studies done by Swash, Mills Eisen, etc. This is where the 6-12-18 month wait figures are pooled from. This is the paper that some people here and on other forums are worried about (needlessly). Not the odd 6.7% article which is quite old now.

Firstly why would I discuss this on this very forum? Does it matter to those that are in a panic, does it add more distress? Well I think it should be addressed because it is a new article that keeps coming up. Like the Walton study it is not going to go away. This forum is dynamic and it should not be afraid to address significant studies. Perhaps a section dealing with so called frightening literature/ medical studies showing them and how their conclusions fit into BFS and offers reassurance.

As I mentioned the Walton study. It no longer holds fear for the old timers on this board because it was discussed openly, sensibly and was thrown out. On this board we have the knowledge and expertise across a huge section of the public, to between us do this. Time and time again it resurfaces as newbies read it. Most experienced members simply redirect their panic to old posts and the newbies then feel reassured.

This former example shows why it is good to analyse the science on this forum. Presented with a monster, by looking closer you see it is no more than the shadow of a mouse, but by refusing to look and criticising those that do, then a monster it will remain to those that have seen it, perhaps too scared to re post or discuss it …….and don’t be naïve “people do look and do see it”, especially on other forums.

So here goes….I will probably be thrown off the board for this, but this is THE ARTICLE that is causing problems and has demonised others. It is THE ARTICLE that if you haven’t read and don’t want to then don’t, but for the many who have read posts about it, waiting times etc, honestly it is not a monster it is just another mouse to BFS suffers and the monster is just wearing a better disguise.

The paper I will summarise, though I know a lot have read it.

Fasciculation potentials and earliest changes in motor unit physiology in ALS
Journal of Neurology, Neurosurgery & Psychiatry
J Neurol Neurosurg Psychiatry 2013;84:963-968 doi:10.1136/jnnp-2012-304

Aim of the paper
It was to define the earliest EMG changes that occurred in ALS. They wanted to follow the process of neurodegeneration within a muscle from normality to fully developed ALS abnormality. (so basically followed changes on EMG over time as the disease progressed, i.e. see what sequence and time frame these EMG changes occurred in).

Why
Study was important to do because being able to recognise subtle changes on EMG meant they could in the future differentiate quicker between ALS and other so called mimic disorders.

What they did
ALS won’t affect all the muscles at once, so most patient will have healthy muscles as well as those weakened ones. Healthy muscles have full strength as defined by the MRC scale 5/5 and no EMG abnormalities)... So they chose to look at 61 of their ALS patients ( mixture of bulbar and limb onset), and monitor what happened within their healthy strong TA muscles as the disease progressed to involve the L5 pool of anterior horn cells i.e this was questioning what many general neurologist were saying i.e. was it really weakness, atrophy, fasciculations in that order. For comparison and controls they used 10 of their own clinically defined BFS sufferers and 37 normal subjects who did not experience any fasciculations.

So in the sequential studies they following ALS patients strong TA muscles over a 12 - 18 month period tracking what happened. They found in brief.

1) Contrary to current theory, Fasciculations tended to be the first abnormality seen. One difference between BFS vs ALS, is in the former the fasciculations always remained the same, however in ALS as time progressed fasciculations changed and became more complex in morphology, more unstable and slower firing rate )

2) Following the fasciculations, unstable MUPs developed as the next feature.

3) Once significant number of motor units became dysfunctional, Fibs/sw and large unstable MUP are seen. (Muscle become progressively clinically weak on MRC scale, and atrophy was seen)

4) Lastly the More affected atrophied the muscle becomes the FP then disappear and do not reappear. The time from stage one to stage 4 was about 12 months in total. So by 6 months in half the patients followed their FP were not their only EMG finding and by 12 months all had sinister TA muscle EMG findings.


So this is the quote from the paper, it is the one that has scared some people reading and been discussed here. It is the quote that made me email the leading author ( Prof Cav)

THIS IS WHERE YOU CANT SKIM READ AND RUN, THIS IS WHERE YOU NEED TO READ ON TO THE END OF THE POST. I AM SHOWING YOU THE MONSTERTHAT MANY OF US GOT OUR CONFLICTING STORIES FROM.......SO GIVE ME THE OPERTUNITY TO SHOW THE MOUSE AFTER!!!!!
Quote from paper “the occurrence of FPs in otherwise normal muscles in ALS, including normal MUP parameters and normal neuromuscular jitter, was an unexpected finding. This is an important observation, however, since it confirms the relevance of FPs as an early feature of ALS. In the Awaji consensus modification of the El Escorial criteria FPs are defined as one of the features suggesting the onset of neurogenic change in the context of a suspected diagnosis of ALS.. Our clinical and electrophysiological studies show that isolated FPs anticipates other EMG changes by 3–9 months and muscle weakness by 6–18 months; variability is related to the rate of disease progression in different subjects.


So I emailed and I specifically asked him…… What as BFS sufferers are we supposed to do after this paper of his !!!!!!!. I pointed out that although his paper says fasciculations in BFS don’t change, we can’t get this practical reassurance because either no FP show up on day of EMG ( they had to prod 5 places for 3min each TA muscle to record FP), and even those that had FP we are rarely told their shape waveform etc . . I asked how we cope when a leading ALS specialist says fasciculations can precede other EMG changes by perhaps as long as 6 months.

Here is the mouse,

He said something very true so please re-read his email but here's his quote ( English is a second language to him and he wrote not his secretary) “ I have observed many patients with bening FPs, I do not remember to be wrong about the diagnosis, benign FPs vs ALS. The reason is simple. ALS pts tend to have upper motor neuron signs at presentation, fasciculations are more widepread, weakness is common (even if subclinical) and the neurophysiological data is typical. In my paper I selected one single muscle, as the target muscle, to show that FPs anticipate other changes. But, although I could find many tibialis anterior (TA) muscle without any other change than FPs, more typical changes fo ALS were found in other more affected muscles at the same time. This is the problem, when I describe that TA showed FPs only because was not affected that did not represent that other muscles were normal, as well. Indeed, in all patients other muscles were clearly abnormal on EMG.

So my summary at the time of that post. He is saying that although FP were the only abnormality picked up in the TA muscles, these were muscles belonging to patients who already had both of the following

a) Clear upper motor neuron signs

b) Severe abnormalities in every other muscle he tested (they had criteria fitting ALS).



So this study does not apply to us. It applies only to ALS patients. Importantly he is not saying ALS starts with fasciculations, far from it, he has no proof of that he doesn’t have before and after patients. What he is concluding is that in patients ALREADY sick with ALS then fascicultions MIGHT be present in their other muscles several months prior to weakness developing in that specific muscle. That is a big difference.”

So as none of us have suspected ALS (we have neither UMN nor LMN signs) this paper therefore does not apply to us. It is none of our business, so let’s put it in the Walton pile where it can gather dust.

Finally In my humble opinion the 6/8/9/12 month wait that comes from this paper, does not apply to most BFS sufferers because we don’t have suspected ALS. I think they are suggesting patients with either COMPLEX FP or clear UMN signs should be followed for up to 18 months.
So as others have said over and over with respect to ALS, a clean clinical means we probably didn’t ever need an EMG ( and this mug has had 3).
HX


LittleLost...just so you know I wasn't singling you out with my statements. I was specifically talking about the 6.7% study. I read through your entire post and it's right on the money. It actually supports this statement...If you do not have asymmetric reflexes, clonus, pathologic reflexes, atrophy, or clinical weakness...you do not need an EMG. You have a clean bill of health, get on with your life and stop worrying. You do not need to wait 3,6,9, or 12 months in order to eliminate the possibility of ***. You don't have it, and your risk of developing it is no higher than the rest of the population because you have fasics. That is supported by DECADES of foot to the pavement practice and observation by some of the world's experts in the field of MND. Getting an EMG in the setting of a normal clinical is like killing a fly with a shotgun...it's an overkill. It might help you sleep at night but it's not medically warranted.

With that said, did I get an EMG? Yes, I did. :mrgreen: Why? Because when I'm not right in the head it affects my judgement. Fear cripples my brain to where I can not reason properly. I begin questioning everything I ever thought I knew. In text books they speak about spasticity...is that cramp an early sign...woe is me. I needed to know other peoples real life experience with BFS, not just read some terms in a medical text. I needed reassurance, just like everyone here needs reassurance. So, if you can't sleep without an EMG, get one. But, medically speaking without other signs...it's not warranted. It's done to placate the patient.

One last thing...I have said this in another post but I want to place it here as well. It's not spoken about...never read anything about it here...maybe I just missed it. But, you can have asymmetric reflexes, hypperflexia, clonus with atrophy, weakness and a babinski sign...and the MATH IS STILL IN YOUR FAVOR. About 90% of the time, it's coming from the spinal cord...most of the time from the neck. Cervical disc issues are very common. *** is still very low on that list of statistical causes for those symptoms. I won't go over the last 10% of the causes because I don't need people doing research but suffice it to say most of the other causes of that 10% are not nearly as scary as ***.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby RGB on February 24th, 2014, 11:46 am

Little Lost wrote:So here goes….I will probably be thrown off the board for this,


Not at all, thanks for taking time to accurately summarise. I can say "accurately" because I didn't trust you and read it all myself anyway :)

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby dARR on February 24th, 2014, 12:47 pm

Nothing at all scary in that imo. I feel that this information changes nothing for those of us who have been told by doctors that we are fine or who have twitched for a reasonable amount of time.

Again it seems pretty clear to me that if a medical SPECIALIST tells you that you don't need further testing then there is nothing in this article that would make you challenge that opinion.

Our Neuros may not know a lot about bfs but they sure do know a hell of a lot about ALS. Please, please trust in them when they tell you not to be concerned.

Thank you for posting this and for making the commentary on the article. It is very reassuring, clear and honest. Your post bore the hallmarks of a true medical professional or indeed anyone who holds the title PHD.
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Scaredlin on February 24th, 2014, 1:08 pm

HX,

A little late in the game, but does "FP" stand for fasciculation potential or fibrilliation potential? And when the researchers refer to an FP, are they talking about what is seen or felt (like a twitching muscle that we see and/or feel on ourselves) OR only a finding on an EMG?

I am asking b/c I just picked up my EMG report today which had several columns, including one for fasciculation and one for fibrillation, and for all areas tested it said "normal" in both.

I am assuming (and shamelessly for reassurance I ask) that puts me in a good place relative to those studies b/c my EMG showed absolutely NO FP. (However, that could have just been a matter of timing b/c my muscles were popping during the test just not while he was testing those particular muscles, and my dr was one of the "30 second" needle in/needle out).

I suppose some of your EMG's then showed FP's, but again, considered okay and still a "clean" EMG b/c of "the company they keep"?

Just trying to understand the relevance of FP and if it means only FP's shown on EMG.

Thanks, your synopsis of the monster/mouse (squeak squeak) was most excellent.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Little Lost on February 24th, 2014, 6:53 pm

Hi Scardlin,

FP does stand for Fasciculation potential. Twitchy Doc is the best person to ask if you want more detail, this is his field, but here is a brief overall summary of what I learned.

In the context of BFS, whether FPs show up or not on the EMG doesn’t really matter. I think in a previous thread a few years back someone did a quick estimate and showed about 50% of people on this board had them. As far as I am led to believe whether they are detected in BFS is dependent on a host of factors combined.

1) Location (some muscles appear to be more prone to fasciculations),

2) Being in the right place within the right muscle at the right time.

2) Total area surveyed, i.e. the more muscles the greater the chance of seeing them.

3) Period of time a muscle is monitored for in a relaxed state.

4) Firing rate of fasciculations in that individual on that particular day

5) time of day may be important, (think I read in an older study 1980s, that some people fasciculate more at night due to effect on their hormone profile and on their nervous system by their circadian rhythms i.e. the 24 hr biological clock means that certain physiological processes in the body occur at certain times throughout the day)……but I am rabbiting on again…someone grab my ears and put me back in the hat.

6) Lastly the experience of the neurophysiologist performing the exam.

Other factors reported to increase fasciculations and detection is stress and hyperventilation during exam, caffeine consumption, and use of certain drugs especially asthma bronchodilators. Also time since the muscle was last used for strenuous exercise.

So is it a good thing for FPs to show up. Some say it is good to observe because neuro can determine their morphology, (I think experienced examiners knew even before the official publications that ALS FP tended to be different. As Gary said his neuro knew the difference 10 years ago).On the other hand some members prefer not to see the FP, reading the term FP on report in black and white can get some people unnecessary spooked and running with their report to those other forums. Like a fly to the spider web, …least said. In light of what has been discussed in this thread It doesnt matter if they are present or not, because without any other clinical signs they are only benign findings on EMG and clinically irrelevent..

I am not sure of all the data, but I think FP on EMG are quite common. TwitchyDoc or others may know the answer to this. Others have put studies here that seem to back this up. My neurophysiologist said " we see it all the time, if I followed up everyone who I recorded isolated FPs in, then i would not have enough EMG machines in the whole country to keep up with the workload).

So Scardlin I hope this answers you in the meantime, but as I said TwitchyDoc is the one to ask, he knows a lot about FP.

Gary
Thank you for not ditching me off the site. Thought when I put my password in I would be greeted with a big RED “ACC ESS DENIED TO THIS FEARMONGERING, STORMCROW NUTTER” message. Cast into the world of eternal twitching with no support. I liked your summary
Quote: So to summarize to all the other members here, if you have als, your remaining healthy muscles might fasciculate before showing signs of other changes......if you have been told by a qualified neuro that you have benign fascics, then you don't fit into this category.
That is exactly what the paper is saying. It is about ALS patients not BFS patients.Not our business at all.

Shawn W: When I was writing my previous post I actually looked for that very statement of yours as it backed up what Prof Cav ( and TwitchDoc) had said. I ran out of time before I found it so glad you reposted.

RGB: Good you read the full thing as your support in my summary will add weight and lessen fear.

Darr: I love your motto at the bottom of your post can I be cheeky “He who fights with Monsters might take care lest he bringith on his fasciculations with all that physical action” Sorry Darr you know I am just lightening things up…..
and I do like your whole phrase, very apt for what we go through here.

Need to go it is nighttime here in Scotland, and as William Wallace said…Its raining straight down and slightly to the side, kind of like my posts.
Hx
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

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