Clean EMG but Later ALS DX?

CapnCrunchy2

Active member
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.



DISCLAIMER: I fully realize that BFS is NOT ALS and that this is a community. 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.
 
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 :) )

Sarah
 
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.

TerryG
 
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!
 
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?

regards
Marcin
 

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