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Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 12:48 am
by J4son
RobJ,

I would like to add something regarding this topic. In a lot of your previous posts you reassure people telling them that Weakness is the true criteria for MND, and I completely agree with this. No weakness or Atrophy means no ALS. However when you say that 4 years is necessary to be cleared, it invalidates your previous statement. Because what you’re really telling newbies is that no-weakness is completely irrelevant unless 4 years have passed because fasciculations can be the first symptom of MND.

What you’re failing to understand here is that not everyone on this board has 20 years under his belt like yourself. You might feel on the safe-side but think about the majority of people here whom have less than 4 years into twitching. Moreover, most people here are not speculating, gambling or guessing about their diagnosis. Most people here have already received a diagnosis from a neurologist. Not from their family doctor or their pets’ veterinary or from Dr. Google, but from duly certified neurologists. Some of the members here were even diagnosed in the best ALS centers on this planet (Mayo Clinic and others.) So I don’t think it’s appropriate to come and tell these people that their diagnosis was not accurate.

Discussing facts and new studies is something and sticking bluntly to an opinion that deals with an extremely small number of cases and trying to promote it as the norm is something else. These studies about a few cases of MND starting with twitching came to refine and polish the common knowledge about the onset of MND not to turn it upside down. If it was so obvious that ALS starts with twitching doctors would have known it decades ago and they wouldn’t have needed to make these studies about a few cases here and there. As mwagner said, and I’m quoting here:

“Anyone who has had to do a study (I had to do a master's thesis in psychology) knows that your goal is to write about something no one else has really addressed so you can get published. So these guys found anomalies they wanted to report on so they could get published and say things like "benign fasciculations are not ALWAYS benign".

I fully agree with this …..

The medical is not an exact science like physics or mathematics. You will always find exceptions, odd cases, outliers etc. no need to make it looks like if it was the norm. You’re a veteran here, your experience is surely needed, but more to reassure people rather than to scare them to death.

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 12:51 am
by Yuliasir
Rob,
you still seem to miss the main idea - one case for 30 years does not mean we are in a bubble and you are not.
Well, Steven Hawkings lives for 50 years with very early onset of ALS. Which is twice very low probable. Does it mean he is in a bubble? Or all other patients are in a bubble of bad luck and he is the only person finding some mumbo jumbo making him to live a prosperous personal, media and scientific life despite on being rather a living brain itself?

most of fellows here are in the bubble of fear, and sticking to medical consensus regarding probability of benign outcome after certain period - which is far not 4 years - rather helps to drive people out of this bubble, than make them blind or ignorant.

wish you feel the difference

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 2:38 am
by TwitchyDoc
Just to clarify one point - Stephen Hawking does not have ALS but some rare form of spinal muscular atrophy. He has residual movements and he breathes independetly.

I do not get why this is still being discussed - clearly there are rare cases when MND starts with fasciculations, we all know that. There are even familial variants that are known to begin like that..But bringing one report and making a dogma of it? So far, on this board, there have been 3 people (DougO, TDenver, Prattstar) who ended up with ALS - quite understandable when it comes to 6,7% report but nearly all of them -despite subjectively feeling perfectly normal - had some kind of abnormalities found on their exams. So there is a difference between them and us which they were not aware of.

I have not read the whole article, I cannot access PubMed from here and there might be very important things we do not know - maybe his fasciculations were localized and non stop in unusal places, his cramps might have been severe etc. etc. It is not possible to discuss a case based on its abstract..

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 4:40 am
by J4son
TwitchyDoc wrote:Just to clarify one point - Stephen Hawking does not have ALS but some rare form of spinal muscular atrophy. He has residual movements and he breathes independetly.


Twitchydoc,

It’s true that Steven Hawking is still able to breath by his own after 50 years. He is also still able to swallow after decades of his diagnosis which is really rare, but are you sure about the diagnosis of spinal muscular atrophy? Never heard that he was officially diagnosed with that. All the sources seem to point to an ALS diagnosis or at least to a kind of MND closely related to ALS. BTW that guy is amazing, and it’s incredible how he was able to accomplish all that with such a terrible disease. I saw the movie “Hawking” … great movie…

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 5:42 am
by Yuliasir
He has residual movements and he breathes independetly

I would rather say VERY residual (as ar as I understnd, those are restricted to one eye-surrounding muscle and diaphragm). Also not sure if he has any other diagnosis, as Encyclopedia Britannica says he has ALS http://www.britannica.com/EBchecked/top ... -W-Hawking

anyway, he has MND of same pattern - ascending progressive paralysis, he is just bloody lucky guy maybe to survive with it for 50 years...

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 5:45 am
by TwitchyDoc
I do not remember exactly but when he first received diagnosis, it was a MND, most probably SMA. He does not have ALS despite it is claimed nearly anywhere - it is mainly because the disease is very similar to ALS (so is SMA) but there is a clear distinction in the fact that ALS is gradually progressive and affects - eventually - bulbar region. Hawking not only breaths on his own, he is also able to swallow. And move a finger.
These things exclude ALS but certainly we could say it is a special variant of motor neuron disease, resembling ALS...

EDIT: I remembered someone was mentioning in a book that he was diagnosed in sixties where no other MNDs were basically known (such as Kennedy's) so it is possible he received an ALS diagnosis. However, his unique cases proves it cannot be ALS as we know it.

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 6:49 am
by readytocheckout
To the newbs and others like me who aren't yet convinced of their bfs diagnosis, the title of this thread could have actually seemed a comforting topic because is says proceeding instead of preceeding. Judging by the responses from everyone who has posted in this thread it's clear that the subject should be preceeding.

I'd just like to thank everyone who chimed in here because you've stopped me from clicking on the link. I've definately got something going on with me, just today my doctor agreed with me when I raised an issue I've noticed with my facial muscles, so the last thing I need is to click on a link like this when so far I'm trying incredibly hard to believe my neuros.

I do have that feeling in the pit of my stomach that something bad is wrong with me and rightly or wrongly I'm visiting this site often when I need to regain some sanity. It's so easy to end up finding something that you didn't want to read, even on this site. But I agree that the decision to not delete this thread was awesome because we don't want to think that posts are being removed because they might cause bfs panic. Thanks to you all for helping me in this thread. Kudos to the mods.

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 6:53 am
by J4son
TwitchyDoc wrote:I do not remember exactly but when he first received diagnosis, it was a MND, most probably SMA. He does not have ALS despite it is claimed nearly anywhere - it is mainly because the disease is very similar to ALS (so is SMA) but there is a clear distinction in the fact that ALS is gradually progressive and affects - eventually - bulbar region. Hawking not only breaths on his own, he is also able to swallow. And move a finger.
These things exclude ALS but certainly we could say it is a special variant of motor neuron disease, resembling ALS...

EDIT: I remembered someone was mentioning in a book that he was diagnosed in sixties where no other MNDs were basically known (such as Kennedy's) so it is possible he received an ALS diagnosis. However, his unique cases proves it cannot be ALS as we know it.


But SMA is not hereditary? I thought it was hereditary and genetic, transmitted within families. At least this is what some websites are saying about SMA. I don't know if it's the case with Hawkin

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 7:09 am
by TwitchyDoc
SMA is inherited in autosomal recessive pattern, i.e. both parents need to carry the gene (and can be healthy themselves). In addition, there are sporadic cases.

The thing is, Hawking has a MND which probably does not fit any classification but it is simply not ALS - its progression, exclusion of bulbar and diaphragm muscles and residual movements (I believe he can control one of his fingers) are things excluding ALS. But I can see why in media it is called ALS - for lay person it does not really matter (except that with ALS, he would have died of respiratory failure decades ago).

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 9:03 am
by Ghayes420
Folks, Robj clearly in uninformed and is swayed by reading scholarly articles that he CLEARLY cannot comprehend on the same level as a neurologist because he himself is not a doctor nor a neurologist. Any attempt by a person on this site to dissect these scholarly papers is skewed with what is known as a 'cognitive filter' because they have no background as a neurologist themselves. There are members on this site who have research backgrounds, that can objectively understand these articles, however as Mitra writes, these PubMed articles are usually written by someone trying to get financial backing or name recognition. As quoted by the Director of Neurology at UCSF (top 5 teaching school) when I asked about the Walton Report, her comment was, "Clearly somebody is trying to make a name for themselves."

Here is a clear example of why Robj is completely ignorant and devoid of knowledge of the neurological community:

His quote:
"Good neuro's will tell you, you are clean after 8 months to 1 year - NO WEAKNESS
Better neuro's will tell you, you are clean after 2 years - NO WEAKNESS
The best neuro's wait about 4 years, "

If you go by these standards, lets look at what we have to choose from in USA and abroad....

Dr. Andrew Eisen - Canada - "in my opinion if after 8 months there are no other clinical features then it is not ALS."----Robj says --> Good
Dr. J. Katz- Director Neurology, University of Stanford, Forbes Norris ALS research center --->Robj says----> Good
Dr. K. Lomen-Hoerth - Director of Neurology UCSF - "One year clean EMG, no chance." ---> Robj says -----> Good
Dr. Robert Miller, Director at Forbes Norris ALS Research Center, San Francisco, ALS research since 1976!! ----> Robj says ---> Good
Dr. McEvoy, Dr. Watson - Mayo Clinic - Rochester, Minnesota ----> Robj says ---> Good
Cleveland Clinic USA ----> Robj says ---> Good
Mass General (Harvard U) ----> Robj says ----> Good

The point of listing the above FACTS are that according to people who don't understand medicine, such as Robj, there ARE NO "BETTER OR BEST" neurologist available for us to see in this country. That is a shame, I must have wasted all my time. I just listed all of the top five ranked neurology clinics in the USA, having spoken to the top 5 on the list personally face to face.

What Robj doesn't understand (again, because he has no clinical experience and hasn't spanned the country speaking with these doctors) is simply this...

If your clinical shows a deficit of some kind and you are having true fasciculations, either visible or diagnostically, YOU WILL BE WATCHED AND MONITORED for a set period of time, sometimes up to 5 years. This was made clear to me by several of the professionals above.

Nobody in this forum (sans pratstar, Doug0, TDenver) has had a clinical exam with obvious abnormal findings within the first year. So if your clinical is clean, then THERE IS NO MONITORING PERIOD REQUIRED. No 2, 3, 4 or 5 year wait is needed to see if you progress because the professionals listed above know FROM EXPERIENCE, not from an article, that this is not the way MND presents itself.

END OF STORY.

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 3:48 pm
by veryworried123
I don't know about the rest of you but I didn't think this helped by anxiety one bit as I'm twitching like a mother *beep*
And when my wife asked me what's wrong with me today the first thing I said was I just read a post where a guy stated twitching can lead too mnd up to and past 4 years and provided some sort of documentation to prove it

Maybe we just need to keep things in perspective and realize we are discussing a rare possibility of a rare diease

Ahhhhhhh

Thanks

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 4:27 pm
by Ghayes420
veryworried123, the first time you run into these articles it is only natural to become a bit worried. Without digging into them and studying them, the titles are sure not fun to see. I have read and studied them all. Take a moment and read my reply above and you will see why these articles don't pertain to you or anyone on this board with a BFS dx from a trained neuro, yourself included. Hope you are doing well and sorry the posting by an uninformed fear-monger caused you even a split second of concern. Relax and enjoy your weekend. Maybe someday you will be twitching for 20 years and instead of posting articles that spread fear, you could pay it forward and provide comfort to those newly diagnosed that are still trying to understand their condition.
-Greg

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 4:38 pm
by veryworried123
Thanks still owe you a gluten packed dinner and drinks in San Fran one day

Thanks

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 7:07 pm
by Little Lost
Can I jump in here,

For years they have searched for a reliable early biomarker, or preclinical signs for the onset stage of ALS, not just to aid as an early warning sign for patients, but mostly for therapeutic trials. Many drugs seem promising, in the lab some can actually halt the development of ALS for long periods of time, however ONLY in mouse and zebrafish models IF they are administered them BEFORE true symptom onset. Nothing works great after the line has been crossed and symptoms develop. This is because by the time weakness is apparent, widespread damage has already been done to the body. There is simply just too much going on at that point. Any potential therapy would need to be multi tasking i.e. stop or slow disease progression ,then reverse damage involving multiple physiological and molecular systems, and lastly protect against relapse. Therefore you begin to see why there is no magical therapy for established ALS. However many think there certainly could be if ALS could be identified, caught and diagnosed very very early, preclinical ( before symptoms), as in the mouse and zebrafish models. Diagnosed at this stage the outcome could be very different.

If they could catch ALS in a preclinical stage there are several interference strategies available which could be tried, i.e. stopping it spreading outward (they know it spreads from cell to cell and the direction it tends to go in) .For example many simple antiepileptic drugs have neuroprotective properties, helping decrease hyperexcitability and neurotoxin build up etc etc....if ALS were caught before symptoms began, there are many many currently available drugs and therapies that may prevent it ever becoming full blown. It is like fixing a leaking tap before it floods your neighbour. leaking taps can be fixed with a washer, but a washer aint going to do much for a ruined bathroom. Therefore it has always been a major goal of ALS research to find any early biomarkers i.e. the leaking tap, the washer, but all they ever get is the flooded house. It is TOO late and the time and targets too numerous. So the theory is find your early reliable biomarker, and you find the cure.

There have been 100s of studies over 4 decades, and scores of avenues tested searching for the elusive early warning sign that preceeds ALS i.e millions of research hours and they have searched 1000s of potential blood markers, changes on MRI results, PET scans, ultrasound anomalies, early EMG findings ,genetic testing, environmental exposures, race, age, location, coexisting conditions, urine analysis, kidney analysis, respiratory disorders, muscle biopsies, diet.... the list goes on for ever.....guess what despite it all.... they have still found NO reliable preclinical early marker for ALS, and that includes the presence of fasciculations.

If fasciculations were a statistically reliable biomarker for early ALS, then let me reassure, this would have been exploited a long time ago, This avenue has been explored by the top of the field. They would not have missed anything so obvious. Statistically fasciculations on their own as an isolated finding are not considered an early biomarker of ALS....period full stop. Here are 3 points I want to make before talking about another study.

1) For example I suspect the 121 patients with BFS study wasn't conducted for our benefit, I suspect it was originally designed to find how many people with fasciculations went on to develop ALS, to see if a correlation of any sort existed, the elusive prize of that early warning system I was talking about....none existed NO LINK FOUND..., so they spun the article the other way.

2) I previously discussed at length Carvalho research into fasciculations as a potential early biomarker of ALS. We dissected his paper on the thread I linked off from the one that hosts his email. (Remember the monster is just the shadow of a mouse). My emails to him were to do with this very research....you read his response. Carvalho is no fly by night neurologist, he is lead author of over 598 publications on ALS research and clinical practice. ( include link at bottom). He helped and reviewed the diagnostic criteria of ALS used globally by the world health organisation He is in demand all over the world and he took time to email to us.... ...yes he found fasciculations can be present in TA muscles before weakness, BUT ONLY IN PATIENTS WHO ALREADY HAD ALS affecting other muscles. This seems to be repeated in other studies showing that short periods of hyperexcitability can occur before weakness, but so far apart from a few individual papers such as the Walton study, none were in healthy individuals. Again a recent study showed stem cell derived motor neurons from ALS patients showed hyperexcitability and intrinsic membrane instability, however these were again from patients who already had the disease. They were not fasciculations in isolation.

3) Eisen...close to 1000 published article ( references included), life work in ALS, and 40 years experience working in ALS clinics. He has seen it all, every rare case etc. He also examined the use of fasciculations as an early ALS biomarker. He said yes it could occur but very very rare. In response to the Walton study he is a bit scathing when he suggests some patients that present with fasciculations before any other sign were perhaps not examined by specialists. ( EMG analysis has moved on quite a bit since then). 40 years experience. Reading his articles and letters I get the feeling ( and this is just my opinion) he says 8 months to cover for the rare outliers, or for those that have not perhaps had a proper EMG by a neuromuscular specialist, for those with complex fasciculations,for those with UMN signs, or perhaps have had ultrasound detection rather than needle EMG. He is not saying you have to wait months he is saying if you have then it aint ALS in his 40 years experience.

4) Italian study of 130 ALS cases, not one had the initial presenting symptom of isolated fasciculations. they all came with something else ( link below)

To understand the dynamics involved during the onset phase of ALS you would need before and after cases. EMG analysis of patients in health before they developed ALS and an EMG after disease onset. ...very rare to come by.

In 2006 Carvalho described 2 such patients ( link below). They had had EMG for rheumatological disease. One woman for a gardening issue, and one man for neck pain diagnosed by MRI as spondylitic changes in cervical spine. Both patients problems resolved, but 18 and 20 months later both independently developed ALS ( sporadic and nothing to do with having arthritis). So the neurologist had paired EMG sets in health and EMG in ALS to directly compare. Read the EMG reports yourself. I noticed right away that in the woman 17 months before diagnosis not one fasciculation recorded or observed in all the 8 muscles she had tested and neurologically examined. In stark contrast later at point of ALS diagnosis she had fasciculations observed in all 4 limbs and tongue all accompanied by other neurogenic changes associated with ALS. Similarly Patient 2 in his 10 muscles EMG no fasciculations recorded or seen, yet after onset they were detected in 4 limbs along with marked motor unit loss and widespread atrophy.

(Ironically and tongue in cheek....Using the same statistical model Rob used.... we can deduce from these above mentioned cases....the absence of fasciculations preceeds onset of ALS.....)

Anyway I like what Carvalho says in this paper " ALS develops rapidly from a finite onset, and should not be regarded as a disorder gradually developing"

It also highlights that although patients describe fasciculations/weakness at what they considered to be the start of their disease, that this is often not the true point of onset, but is actually the point of awareness......... So I guess by the time they are aware of the symptoms the disease is already well under way. If this is indeed the case it explains why fasciculations are most often seen with other neurogenic changes in ALS.

Hope this helps.
Hx

ps just a wee quibble about pubmed. Pubmed is an academic site. Anything I have had published is research that has been conducted by the scientific method. Everything has to be reproducible, and meticulous. Before being accepted for publication my work is peer reviewed by an independent panel of experts, and corrections have to be made over and over, also often further experiments. Some papers are the accumulation of years and years of hard work, it is not "just a site for people who want funding". Pubmed is an invaluable source of information and to dismiss it as crap and full of people with vested interests ( which is against the whole ethos of pubmed) is dismissing all the scientists globally who submit papers there. How could I find out about what others in my field are discovering if it wasn't for pubmed. Should I read any old internet site, perhaps the daily tabloid. All research scientists keep in touch through pubmed. It creates a global lab. That is one of the first things we do each week, read our pubmed see who is publishing what in our topic, then we have meetings at the end of each week to discuss their findings, methods used, statistical models applied, email the authors about certain experiment set ups etc, etc etc. Of course there are some low impact journals and they accept the less novel research, but the same standards apply. It is those that DONT publish on pubmed you have to be wary of, not those that do.

pps As you know I always include my references. However if anyone wants the references please feel free to PM me. Greg is right some articles should not be put here not out of censorship, but those without a medical background may not understand all the terminology and statistics, so they can be alarming, misinterpreted and cause upset. I may know about some areas of science, but I would be in gobbly gloop land if I tried to understand a legal document...each to his own.

ppppsss... The study Rob talked about was done in 1986 for f sake the EMG machine from that time would be in a museum now as a device of torture used in medieval times...honest technology has moved on somewhat

Re: Fasciculatoins proceeding MND

PostPosted: July 11th, 2014, 8:18 pm
by garym
Little Lost wrote:Can I jump in here,

For years they have searched for a reliable early biomarker, or preclinical signs for the onset stage of ALS, not just to aid as an early warning sign for patients, but mostly for therapeutic trials. Many drugs seem promising, in the lab some can actually halt the development of ALS for long periods of time, however ONLY in mouse and zebrafish models IF they are administered them BEFORE true symptom onset. Nothing works great after the line has been crossed and symptoms develop. This is because by the time weakness is apparent, widespread damage has already been done to the body. There is simply just too much going on at that point. Any potential therapy would need to be multi tasking i.e. stop or slow disease progression ,then reverse damage involving multiple physiological and molecular systems, and lastly protect against relapse. Therefore you begin to see why there is no magical therapy for established ALS. However many think there certainly could be if ALS could be identified, caught and diagnosed very very early, preclinical ( before symptoms), as in the mouse and zebrafish models. Diagnosed at this stage the outcome could be very different.

If they could catch ALS in a preclinical stage there are several interference strategies available which could be tried, i.e. stopping it spreading outward (they know it spreads from cell to cell and the direction it tends to go in) .For example many simple antiepileptic drugs have neuroprotective properties, helping decrease hyperexcitability and neurotoxin build up etc etc....if ALS were caught before symptoms began, there are many many currently available drugs and therapies that may prevent it ever becoming full blown. It is like fixing a leaking tap before it floods your neighbour. leaking taps can be fixed with a washer, but a washer aint going to do much for a ruined bathroom. Therefore it has always been a major goal of ALS research to find any early biomarkers i.e. the leaking tap, the washer, but all they ever get is the flooded house. It is TOO late and the time and targets too numerous. So the theory is find your early reliable biomarker, and you find the cure.

There have been 100s of studies over 4 decades, and scores of avenues tested searching for the elusive early warning sign that proceeds ALS i.e millions of research hours and they have searched 1000s of potential blood markers, changes on MRI results, PET scans, ultrasound anomalies, early EMG findings ,genetic testing, environmental exposures, race, age, location, coexisting conditions, urine analysis, kidney analysis, respiratory disorders, muscle biopsies, diet.... the list goes on for ever.....guess what despite it all.... they have still found NO reliable preclinical early marker for ALS, and that includes the presence of fasciculations.

If fasciculations were a statistically reliable biomarker for early ALS, then let me reassure, this would have been exploited a long time ago, This avenue has been explored by the top of the field. They would not have missed anything so obvious. Statistically fasciculations on their own as an isolated finding are not considered an early biomarker of ALS....period full stop. Here are 3 points I want to make before talking about another study.

1) For example I suspect the 121 patients with BFS study wasn't conducted for our benefit, I suspect it was originally designed to find how many people with fasciculations went on to develop ALS, to see if a correlation of any sort existed, the elusive prize of that early warning system I was talking about....none existed NO LINK FOUND..., so they spun the article the other way.

2) I previously discussed at length Carvalho research into fasciculations as a potential early biomarker of ALS. We dissected his paper on the thread I linked off from the one that hosts his email. (Remember the monster is just the shadow of a mouse). My emails to him were to do with this very research....you read his response. Carvalho is no fly by night neurologist, he is lead author of over 598 publications on ALS research and clinical practice. ( include link at bottom). He helped and reviewed the diagnostic criteria of ALS used globally by the world health organisation He is in demand all over the world and he took time to email to us.... ...yes he found fasciculations can be present in TA muscles before weakness, BUT ONLY IN PATIENTS WHO ALREADY HAD ALS affecting other muscles. This seems to be repeated in other studies showing that short periods of hyperexcitability can occur before weakness, but so far apart from a few individual papers such as the Watson study, none were in healthy individuals. Again a recent study showed stem cell derived motor neurons from ALS patients showed hyperexcitability and intrinsic membrane instability, however these were again from patients who already had the disease. They were not fasciculations in isolation.

3) Eisen...close to 1000 published article ( references included), life work in ALS, and 40 years experience working in ALS clinics. He has seen it all, every rare case etc. He also examined the use of fasciculations as an early ALS biomarker. He said yes it could occur but very very rare. In response to the Watson study he is a bit scathing when he suggests some patients that present with fasciculations before any other sign were perhaps not examined by specialists. ( EMG analysis has moved on quite a bit since then). 40 years experience. Reading his articles and letters I get the feeling ( and this is just my opinion) he says 8 months to cover for the rare outliers, or for those that have not perhaps had a proper EMG by a neuromuscular specialist, for those with complex fasciculations,for those with UMN signs, or perhaps have had ultrasound detection rather than needle EMG. He is not saying you have to wait months he is saying if you have then it aint ALS in his 40 years experience.

4) Italian study of 130 ALS cases, not one had the initial presenting symptom of isolated fasciculations. they all came with something else ( link below)

To understand the dynamics involved during the onset phase of ALS you would need before and after cases. EMG analysis of patients in health before they developed ALS and an EMG after disease onset. ...very rare to come by.

In 2006 Carvalho described 2 such patients ( link below). They had had EMG for rheumatological disease. One woman for a gardening issue, and one man for neck pain diagnosed by MRI as spondylitic changes in cervical spine. Both patients problems resolved, but 18 and 20 months later both independently developed ALS ( sporadic and nothing to do with having arthritis). So the neurologist had paired EMG sets in health and EMG in ALS to directly compare. Read the EMG reports yourself. I noticed right away that in the woman 17 months before diagnosis not one fasciculation recorded or observed in all the 8 muscles she had tested and neurologically examined. In stark contrast later at point of ALS diagnosis she had fasciculations observed in all 4 limbs and tongue all accompanied by other neurogenic changes associated with ALS. Similarly Patient 2 in his 10 muscles EMG no fasciculations recorded or seen, yet after onset they were detected in 4 limbs along with marked motor unit loss and widespread atrophy.

(Ironically and tongue in cheek....Using the same statistical model Rob used.... we can deduce from these above mentioned cases....the absence of fasciculations proceeds onset of ALS.....)

Anyway I like what Carvalho says in this paper " ALS develops rapidly from a finite onset, and should not be regarded as a disorder gradually developing"

It also highlights that although patients describe fasciculations/weakness at what they considered to be the start of their disease, that this is often not the true point of onset, but is actually the point of awareness......... So I guess by the time they are aware of the symptoms the disease is already well under way. If this is indeed the case it explains why fasciculations are most often seen with other neurogenic changes in ALS.

Hope this helps.
Hx

ps just a wee quibble about pubmed. Pubmed is an academic site. Anything I have had published is research that has been conducted by the scientific method. Everything has to be reproducible, and meticulous. Before being accepted for publication my work is peer reviewed by an independent panel of experts, and corrections have to be made over and over, also often further experiments. Some papers are the accumulation of years and years of hard work, it is not "just a site for people who want funding". Pubmed is an invaluable source of information and to dismiss it as crap and full of people with vested interests ( which is against the whole ethos of pubmed) is dismissing all the scientists globally who submit papers there. How could I find out about what others in my field are discovering if it wasn't for pubmed. Should I read any old internet site, perhaps the daily tabloid. All research scientists keep in touch through pubmed. It creates a global lab. That is one of the first things we do each week, read our pubmed see who is publishing what in our topic, then we have meetings at the end of each week to discuss their findings, methods used, statistical models applied, email the authors about certain experiment set ups etc, etc etc. Of course there are some low impact journals and they accept the less novel research, but the same standards apply. It is those that DONT publish on pubmed you have to be wary of, not those that do.

pps As you know I always include my references. However if anyone wants the references please feel free to PM me. Greg is right some articles should not be put here not out of censorship, but those without a medical background may not understand all the terminology and statistics, so they can be alarming, misinterpreted and cause upset. I may know about some areas of science, but I would be in gobbly gloop land if I tried to understand a legal document...each to his own.

ppppsss... The study Rob talked about was done in 1986 for f sake the EMG machine from that time would be in a museum now as a device of torture used in medieval times...honest technology has moved on somewhat


awesome post, thanks!
Gary