Clean EMG but later ALS dx?

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Clean EMG but later ALS dx?

Postby TheyDon'tBelieveMe on April 21st, 2004, 4:40 am

I don't mean to upset anyone, so please don't get angry at me if the information here doesn't fit what you want to believe. Nonetheless, I started an interesting thread titled "Clean EMG but later ALS dx?" at this ALS board. The responses are interesting.

http://brain.hastypastry.net/forums/sho ... hp?t=10171

DISCLAIMER: I fully realize that BFS is NOT ALS and that this is a BFS forum. However, whereas there have been MANY comments made here that there are NO cases of a clean EMG with a subsequent ALS dx, therefore I think this information is appropriate for this board.

Please don't hate me.
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Postby sarahtonin on April 21st, 2004, 6:26 am

The responses on the ALS board state that an EMG will not show upper motor neuron involvement. Twitches can be evidence of lower motor neuron damage which would be shown on an EMG, so if you have twitches and a clean EMG you don't have ALS (very simplified of course :) )

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A later dx of als

Postby terryg on April 21st, 2004, 6:44 am

To they do not believe me

I also have run into information on a pub med search about a clean emg, fasciculations with a dx of bfs for four years then later als. In my limited understanding on the emg fibrillation potentials are a sign of deinnervation and while fasiculation potentials can be a indicator but does not necessarily mean deinnervation. What seems to be impossible is to be diagnosed with als if you have a current clean emg. I did not post the information when I found it because of the question of who would it benefit. It certainly did not help my pysche. In fact I have been avoiding any more searches on the subject.

The positive way I try to look at it is that I do not have a dx of als now and there are a great many people on this site that have bfs for many years without any erosion of motor function.

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Postby jcavan4125 on April 21st, 2004, 6:44 am

Hi TDBM,
It is not a matter of hating you; I don't think anyone on this board hates you, or even dislikes you for that matter. It does get old though rehashing the same things over and over again.
It really doesn't matter who said what on which board, it is all anecdotal information. There is a huge difference between an EMG which doesn't show anything specific and a normal EMG. What patients perceive (and quite possibly even what their doctor told them) was a "clean" EMG, may in fact be one which showed nonspecific changes that could not be diagnosed as anything at that time. Remember that it takes fairly strict criteria to diagnose ALS. There have been several accounts of patients taking 18 months or more, requiring multiple EMGs to actually be diagnosed with ALS. I have even read of one account of a patient that had twitches for 4 years before developing weakness. His EMG however, was abnormal from the first time he was tested. It was not abnormal enough to diagnose him with anything specific, but it was clearly not normal!
In my opinion, we should restrict ourselves on this board to information that is verifiable, not anecdotal stories from people we don't even know. We have already had one instance on this board of someone telling us they were diagnosed with ALS when it was not true. Remember this is the internet and I'm sure that you can find people out there that will support or not support any theory you wish them to!
I can tell you that I have searched (on medline) every major medical/neurological journal available for verification of the theory you speak of "Clean EMG followed by development of ALS". Medline is a search engine that looks at thousands of medical journals from all over the world going back to 1966. Do you know how many hits I got, ZERO! I have done this on more than one occasion and have used various catch phrases. I can not find even one instance of this ever happening, anywhere. You would think a reportable event such as this would be listed somewhere if it has ever happened! Now I'm not saying that it has never happened; all I'm saying is that I have never found evidence that it has. If you can cite a reputable journal article that shows different, please do so!
There are however several sources cited on this board and elsewhere that agree that a "normal" neurologic exam (No atrophy, hyperreflexia or weakness) and a "normal" EMG in a patient means no ALS period!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Pole on April 21st, 2004, 7:25 am

TDBM,

I understand how you feel - I was in the same place some time ago. I tried to convince myself and OTHERS that they are not right when saying that clean emg, no weakness, normal exam means nothing, because...I found sometning on internet or any PALS from braintalk said something against this reassurance theory.

10 months ago I would panic if I would see what you posted. Now it is only ridiculous! Really. It means nothing for me! I had normal emg but it's not the main reason why I am easy. The main reason is that I have no weakness or any other sympthoms but twitching (I twitch a lot lately).

And the truth is that replies for you post on braintalk were not a bad news for us.

Clean EMG and after that ALS? OK, but:

1. maybe sometimes very early in bulbar onset

2. when upper neuron degeneretion is stronger than lower neuron degeneration in early stage - you would have a lot of spasticity and VERY strong hyperreflexia in neuro exam. Lower neuron is not affecetd yet - EMG shows it clearly! (so why you twitch if it's ALS twitching. Twitching is a lower neuron sign)

So (look at point 2) if you twitch and this twitching is due to lower motor neuron degeneration in ALS, EMG MUST show LMN degeneration. If you twitch and have clean EMG it do means that your twitching is not from that fatal reason. Understood?

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Postby Bradford on April 21st, 2004, 3:21 pm

I strongly agree with the replies from jcavan and Pole. These reports are in fact ancedotal. If push comes to shove, we must weight these out with reports of ALS diagnosis going into remission. Both types of cases are medical miracles and rare which nobody can explain or draw conclusions from.

Twitching does not predispose somebody to ALS eventhough a clean electrodiagnostic studies and physical exam is said to be normal. Twitching can be casued by many things and the experts agree that ALS type of twitching is always seen later when changes are seen in the EMG showing signs of denervation. Twtiching is a symptom, denervation is a sign.

When denervation occurs the muscle eventually atrophies and thats when
weakness occurs. Generally, most people present to the doctor when they see something is wrong with their strength in a progressive pattern.
The EMG confirms abnormalties and the twitching usually follows or can be immediately attributed to the denervation process by EMG.

I can see how a doctor may mis interrept strength, but in ALS it is generally assymetrical and the doctor is comparing one side of the body against the other. If there is weakness, they will know. This also goes for changes in reflexes.

When twitching due to motor neuron disease occurs, other signs such as hyporeflexia (reduced or no reflex response) are generally detected with weakness and atrophy. This leads the doctor to consider lower motor neuron disease processes. Upper motor neuron disease shows signs of hyperreflexia (increased and very brisk reflexes) clonus, spacticity and weakness. Twitching alone is meaningless unless there other other serious changes as indicated above.

Motor neuron diseases are always progressive with acception to the rare cases when it has gone into remission. Twitchers and non-twtichers alike can develop motor neuron diseases at anytime. As for the time line of progressive degenoration, generally a patient will present with signs within weeks or months., This is due to the fact that they probably have already been seeing the symptoms for a while prior to seeing a doctor. while.

If the said report is impling that twtiching come first, this goes against the facts of what they know about the disease. Whos to say the twitching in these patients wasn't benign and they just happen to develop ALS like most of the general public. If there was a correlation and predispostion
to motor neuron diseases with twitching, then BFS wouldn't be a separate
diagnosable entity and all of twitchers would have experiences of
"progressive" degeneration of our health.
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Postby dwpierce on April 21st, 2004, 4:30 pm

Thank you Bradford


For the well written post.
It ties together all I have read and seen here and on other boards.

It seems I am like some of the rest here. I look and look and seem to be only drawn to the one in a million case. And of course I apply it to myself even though I have read hundreds of posts like yours and many doctors reports to support it.

Thanks again it saves me from going off into my doom and gloom world of obsession.
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