Calling on TwitchyDoc -- Tongue Fascics

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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 10th, 2013, 1:07 pm

TwitcherHH's video shows tongue fasciculation quite well but they can be bigger, from a few to several milimeters. I have had them for more than 3 years.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 10th, 2013, 4:05 pm

TwitchyDoc wrote:TwitcherHH's video shows tongue fasciculation quite well but they can be bigger, from a few to several milimeters. I have had them for more than 3 years.


Kind of a change of subject. From reading this site, I've seen lots of back-and-forth on the clinical significance of tongue fasics. It is so weird to me that the medical literature hasn't ever described them as benign. My MND specialist says that, in his 35 year career, he's seen over 1,000 MND patients, and many who thought they had MND, but it was benign. I asked him specifically about tongue fasciculations, and he said he's seen them on normal patients dozens of time and, to paraphrase, they have no independent significance absent weakness or objective atrophy. The only abnormal finding during my exams were mildly diminished reflexes of the knees, which was non-specific. (Still can't figure out that one as I thought anxious people have increased reflexes) I was convinced I was showing ALS abnormalities with my profuse fasics, etc., and he said very clearly, "ALS is a disease of weakness, and you don't have any. Period."

Also, I want to comment on some of the literature on fasics and follow-up that I've seen discussed here. I've read the Carlhavolo studies on patients presenting with cramping/fasics and going on to develop MND, but I'm perplexed by the connection. The reports I've read are often not long, and don't present the entire work-up of the patients. Plus, as an attorney, I'm obligated to note the obvious causation/correlation fallacy. Just because one has benign fasiculations/cramps, does not mean that they cannot develop ALS later; but it does not follow that the disorders have any causal connection. It's like saying chronic headaches present in one who eventually develops brain cancer are the cause of the cancer, itself -- even though both share similar symptoms.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 10th, 2013, 4:17 pm

TwitchyDoc wrote:TwitcherHH's video shows tongue fasciculation quite well but they can be bigger, from a few to several milimeters. I have had them for more than 3 years.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby StressLess on September 10th, 2013, 7:55 pm

js1 wrote:
TwitchyDoc wrote:TwitcherHH's video shows tongue fasciculation quite well but they can be bigger, from a few to several milimeters. I have had them for more than 3 years.


Kind of a change of subject. From reading this site, I've seen lots of back-and-forth on the clinical significance of tongue fasics. It is so weird to me that the medical literature hasn't ever described them as benign. My MND specialist says that, in his 35 year career, he's seen over 1,000 MND patients, and many who thought they had MND, but it was benign. I asked him specifically about tongue fasciculations, and he said he's seen them on normal patients dozens of time and, to paraphrase, they have no independent significance absent weakness or objective atrophy. The only abnormal finding during my exams were mildly diminished reflexes of the knees, which was non-specific. (Still can't figure out that one as I thought anxious people have increased reflexes) I was convinced I was showing ALS abnormalities with my profuse fasics, etc., and he said very clearly, "ALS is a disease of weakness, and you don't have any. Period."

Also, I want to comment on some of the literature on fasics and follow-up that I've seen discussed here. I've read the Carlhavolo studies on patients presenting with cramping/fasics and going on to develop MND, but I'm perplexed by the connection. The reports I've read are often not long, and don't present the entire work-up of the patients. Plus, as an attorney, I'm obligated to note the obvious causation/correlation fallacy. Just because one has benign fasiculations/cramps, does not mean that they cannot develop ALS later; but it does not follow that the disorders have any causal connection. It's like saying chronic headaches present in one who eventually develops brain cancer are the cause of the cancer, itself -- even though both share similar symptoms.


I've always thought this as well. The pathology of the disease points out that these cases are more than likely coincidences or they may have presented with fasics only to find out later that they have clinical weakness. Unless people think the pathology of ALS is wrong, i.e. twitching is a sign of the nerve pathways disconnecting, than I think it's possible to chalk it up to these other factors.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 2:38 am

It is not that simple, fasciculations are NOT sign of dying nerves (this is just general inaccurate simplification), they are a result of hyperexcitability that accompanies the degeneration and - in some cases - also preclude it. And of course, the hyperexcitability can exist for no obvious reason (BFS). A very good article about that (also about fasciculations heralding ALS) was released this year and contains a lot of information that will help you understand how complex things are and why there are no hard rules: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3633193/

Just a side note, Prof. Carvalho is considered to be the best MND specialist in Europe, so is Dr.Eisen in Canada (his books are textbooks for MND specialists around the world), they are not some neurologists who could misinterpret findings or do not know how to correlate findings, js1 probably read just the abstract because I have read many of their studies and they are pretty extensive, including shape and waveform description of fasciculations etc. They presented also a case of a "benign" MND, which started with fasciculations but stabilized after a few years with only slight disability.

This is just to say, do not simplify things, medicane is not a law, diseases have their dynamics, they are changing and the connection might be only obvious on the pathopsysiological levels (as the study mentioned, the limb which had fasciculations two years before the weakness onset was found to have undergone extreme reinnervation, which means that the body was compensating for the loss of neurons by collateral sprouting and that is why the strenght was maintaned).
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby Seepi27 on September 11th, 2013, 8:22 am

TwitchyDoc wrote:It is not that simple, fasciculations are NOT sign of dying nerves (this is just general inaccurate simplification), they are a result of hyperexcitability that accompanies the degeneration and - in some cases - also preclude it. And of course, the hyperexcitability can exist for no obvious reason (BFS). A very good article about that (also about fasciculations heralding ALS) was released this year and contains a lot of information that will help you understand how complex things are and why there are no hard rules: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3633193/

Just a side note, Prof. Carvalho is considered to be the best MND specialist in Europe, so is Dr.Eisen in Canada (his books are textbooks for MND specialists around the world), they are not some neurologists who could misinterpret findings or do not know how to correlate findings, js1 probably read just the abstract because I have read many of their studies and they are pretty extensive, including shape and waveform description of fasciculations etc. They presented also a case of a "benign" MND, which started with fasciculations but stabilized after a few years with only slight disability.

This is just to say, do not simplify things, medicane is not a law, diseases have their dynamics, they are changing and the connection might be only obvious on the pathopsysiological levels (as the study mentioned, the limb which had fasciculations two years before the weakness onset was found to have undergone extreme reinnervation, which means that the body was compensating for the loss of neurons by collateral sprouting and that is why the strenght was maintaned).


So hyperexcitability (twitching) can precede weakness by 'many months'. Is this a reference to the infamous Walton report or is it some other study? And how 'many months' are we talking about here?
Last edited by Seepi27 on September 11th, 2013, 9:54 am, edited 1 time in total.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 8:47 am

We have discussed that many times on this forum, most patients with hyperexcitability preceding LMN degeneration will develop weakness in 3-6 months. It has been known for decades, that is why a neurologists arrange follow-up in 6-12 months..Just to be sure and give you a solid peace of mind.

I posted the article for you to understand the topic of hyperexcitability and its complexity, so do not focus on a sentence which is just stating what sometimes can happen but it is not common.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 11th, 2013, 11:42 am

TwitchyDoc wrote:It is not that simple, fasciculations are NOT sign of dying nerves (this is just general inaccurate simplification), they are a result of hyperexcitability that accompanies the degeneration and - in some cases - also preclude it. And of course, the hyperexcitability can exist for no obvious reason (BFS). A very good article about that (also about fasciculations heralding ALS) was released this year and contains a lot of information that will help you understand how complex things are and why there are no hard rules: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3633193/

Just a side note, Prof. Carvalho is considered to be the best MND specialist in Europe, so is Dr.Eisen in Canada (his books are textbooks for MND specialists around the world), they are not some neurologists who could misinterpret findings or do not know how to correlate findings, js1 probably read just the abstract because I have read many of their studies and they are pretty extensive, including shape and waveform description of fasciculations etc. They presented also a case of a "benign" MND, which started with fasciculations but stabilized after a few years with only slight disability.

This is just to say, do not simplify things, medicane is not a law, diseases have their dynamics, they are changing and the connection might be only obvious on the pathopsysiological levels (as the study mentioned, the limb which had fasciculations two years before the weakness onset was found to have undergone extreme reinnervation, which means that the body was compensating for the loss of neurons by collateral sprouting and that is why the strenght was maintaned).


I am certainly not doubting Dr. Carvalho's credentials, or the hyperexcitability phase -- just noting that it seems to be an exception rather than a rule. And, for the record, I have not read all of his work -- but the works I did read, I didn't just read the abstract. My point is that plucked case studies cannot be accepted at a high level of confidence without more demonstrating the causal connection between a presenting symptom and the manifestation of a disease (MND). Furthermore, I understand Dr. Carvalho's views on the significance of fasciculations in the diagnosis of ALS to be that the presence of fasciculation (even without fibs/psw -- which are, in fact, usually present even in "healthy" muscles of people with ALS) carries significance only when in the presence of other findings of chronic neurogenic changes in an affected body region -- i.e., complex firing of MUPs, etc.

And, not to harp on a technicality, but to the extent fasciculations are generally an associated finding of ALS, they are a "sign" of a dying nerve process because they arise from the axons innervating the muscles. The muscle fibers of completely atrophied muscles do not fasciculate or fibrillate. Am I incorrect?
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 12:06 pm

js1, exactly, it is atypical but it happens and this is what we discuss here.

As for the signifficance of fasciculations, not sure if you understood it well - Al Awaji criteria states that if patient is suspected to have ALS (have particular abnormalities e.g. in left arm) than fasciculations in right arm are considered to have the same signifficance as fibrillations or positive sharp waves as it is a sign that denervation will appear. This is to enable quicker diagnosis as old El Escorial required specific findings in 3 spinal segments which many patients never fullfilled even with clear clinical picture - and thus never got Rilutek or insurance support etc.

You are correct in saying that completely denervated ("disconnected") muscles do not fasciculate, because there are no anterior horn cells left to send impulses. Again, denervation starts with the hyperexcitability phase and it presents as fasciculations and cramps (in LMN)...the problem that is so scary for us is that for some people, this phase takes much longer than for the majority of patients.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 11th, 2013, 12:19 pm

TwitchyDoc wrote:js1, exactly, it is atypical but it happens and this is what we discuss here.

As for the signifficance of fasciculations, not sure if you understood it well - Al Awaji criteria states that if patient is suspected to have ALS (have particular abnormalities e.g. in left arm) than fasciculations in right arm are considered to have the same signifficance as fibrillations or positive sharp waves as it is a sign that denervation will appear. This is to enable quicker diagnosis as old El Escorial required specific findings in 3 spinal segments.

You are correct in saying that completely denervated ("disconnected") muscles do not fasciculatate, because there are no anterior horn cells left to send impulses. Again, denervation starts with the hyperexcitability phase and it presents as fasciculations and cramps (in LMN)...the problem that is so scary for us is that for some people, this phase takes much longer than for the majority of patients.


Thanks, Docen. (I'm a corporate attorney, but I have a background in molecular biology, so some of this stuff actually interests me -- go figure!) I think we're saying the same thing. I read the review for revised electrodiagnostic criteria for ALS (http://www.alsrg.org/documents/awaji.pdf). My point is that, even under the Al Awaji criteria, chronic neurogenic changes (CNC) must accompany fasciculation potentials (on EMG or clinical observance) for the fasciculations to qualify as evidence of LMN degeneration. In other words, without CNC, fasciculations, even widespread, are non-specific under Al Awaji.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 12:30 pm

You are right, exactly - but in that case, the fasciculations are considered to be enough in otherwise healthy regions, if other regions show CNC. Mind you that this is only related to ALS electrophysiological criteria, it only says whether or not the patient classifies for the ALS diagnosis. Not whether or not he will progress from the current condition.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 11th, 2013, 12:43 pm

TwitchyDoc wrote:You are right, exactly - but in that case, the fasciculations are considered to be enough in otherwise healthy regions, if other regions show CNC. Mind you that this is only related to ALS electrophysiological criteria, it only says whether or not the patient classifies for the ALS diagnosis. Not whether or not he will progress from the current condition.


On page 499, sect. 3, seems to suggest otherwise: "We recognise that muscles may show evidence of chronic neurogenic change in the absence of fibs-sw. We therefore propose that the presence of fasciculation potentials (FPs) in a muscle identified as showing needle EMG features of neurogenic change should serve as evidence of ongoing denervation, equivalent in importance to fibssw." Seems to me that's saying that FPs -- whether clinically observed or observed on EMG -- are only indicative of the diagnostic criteria if they are present in a limb demonstrating CNC.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 12:53 pm

Yes, this is true, it depends on the context. Can be the same region or another but there must be CNC for fasciculations to carry the diagnostic value:

One other change from revised El Escorial
criteria is that using Awaji criteria, in the presence of chronic neurogenic findings on
EMG in a patient with a clinical history suggestive of ALS, fasciculation potentials
are equivalent to fibrillation potentials and positive sharp waves in denoting acute
denervation, especially if the fasciculation potentials have unstable or complex
morphology


The main thing is that you do not need the fibrillations or positive sharp waves to get the ALS diagnosis.
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby js1 on September 11th, 2013, 1:29 pm

TwitchyDoc wrote:Yes, this is true, it depends on the context. Can be the same region or another but there must be CNC for fasciculations to carry the diagnostic value:

One other change from revised El Escorial
criteria is that using Awaji criteria, in the presence of chronic neurogenic findings on
EMG in a patient with a clinical history suggestive of ALS, fasciculation potentials
are equivalent to fibrillation potentials and positive sharp waves in denoting acute
denervation, especially if the fasciculation potentials have unstable or complex
morphology


The main thing is that you do not need the fibrillations or positive sharp waves to get the ALS diagnosis.


Sorry, one more question. I've read other studies that say that the AA criteria dramatically reduces diagnosis time, particularly for Bulbar patients. Does evidence of "clinical" chronic neurogenic changes mean clinical weakness assessed by a neuro? Also, if Bulbar-suspected ALS patient were to meet the AA criteria, would the clinical observation of a fasciculation in the leg, for instance, carry the same weight as a FP on an EMG?
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Re: Calling on TwitchyDoc -- Tongue Fascics

Postby TwitchyDoc on September 11th, 2013, 2:55 pm

The bulbar onset patients often have clear bulbar symptoms but could not be given an ALS diagnosis because the limbs are affected later. As for the findings, it must be on EMG which can distinquish between neurogenic weakness and e.g. the issue in the neuromuscular junction, so it cannot be just a clinical observation but it is in the context of clinical history. A fasciculation alone is not sufficient, there must be at least reduced recruitment pattern or other issues with motor unit potentials. The change is just about the fact that fibrillations and positive sharp waver are not needed anymore in this settings.
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Re: Calling on TwitchyDoc -- Tongue Fascics

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