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To Arron

Postby Pole on July 7th, 2003, 3:15 am

Hi Arron

I hoped that you would respond "twiching all over" thread by poppo_w.
I am really wonder what is your opinion about perypheral nerves hyperexcitability (PNH) as a early symptom of ALS. I know you have read a lot about all this stuff so your opinion is very important for me (and not only for me, I think).

I have been thinking a lot about that and I would like to share my opinion.

What most of us call "fasciculations" are not this kind of fasciculations characteristic for ALS. ALS fascics are very fine, propably constant in every place they apear (not come and go) and they are hardly visible - that is way neuros use special lamp while looking for fascics.
This kind of fascics is ALWAYS a secondary symptom of ALS and is ALWAYS accompanied by weakness and it is impossible to have normal EMG of muscle with these fascics.
So you are totally right in all you say if you are talking about this kind of fascics.

But there is also the second truth. Many people (I think most of this site users) suffer from other kind of twiches. I have no idea if calling it fasciculations is not a mistake. Doesn't matter. These twiches are totally diffrent from ALS twiching:
1. stronger
2. come and go
3. random
4. visible (sometimes through clothes)
5. accompanied by fatigue (not weakness).

I think we should call it PNH. My question is: may PNH be a first symptom of early ALS. In my opinion (after reading poppo_w thread) the answer is YES. That is why some people with ALS tell us that they had fasciculations as first symptom - without weakness, without atrophy. They are talking about PNH not about ALS fascics. If they felt it strongly and wildspread it had to be PNH not ALS fascics.

What do you think?

Best regards
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Postby tlotoxl on July 7th, 2003, 6:02 am

I'm not Aaron, but I'll chirp in anyway to say that your argument makes a lot of sense to me.
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Postby Pole on July 7th, 2003, 6:22 am

And one more thing: If I am right it is also possible to have clean EMG during this early phase (PNH only). Some people (even on this forum) told that their first EMGs were clear and the second one showed denervation.
I think that if anybody with ALS has clean EMG must be in early PNH only phase.

Don't understand me wrong - I do not want to tell that all of us have ALS. Contrary - I still believe that most of us have BFS
Just want to know what do you think about my consideration.

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Postby Asterix on July 7th, 2003, 7:45 am

Hi Marcin,

just one remark to your assumption (ALS fascics vs. BFS fascics)

Most neurologist agree that benign fasciculations can NOT be distinguished from "ALS fasciculations" by clinical features alone.
Not even based on EMG signature (However, there has been one study
reporting a (weak) correlation between the fireing rate of the fascics and
their potential of malignancy, but this studie was refuted later)
(Just take a look at the video clip of a fasciculating ALS patient posted on this board sometime ago)
And vice versa: what you describe as the "ALS fasciculation" (i.e. fine and constant rippling) can also be due to BFS (I for myself have them in the calves after exercise)

So, it can not be said often enough: a twitch is a twitch and it is impossible to tell wether a fasciculation is due to ALS or due to
BFS (nerve hyperexcitability)
based solely on any clinical feature like size, frequency, twitching pattern etc.

The one important distinguishing factor is WHAT COMPANY THEY (the twitches) keep. Only if the fascics are observed together with other neurological defivits like weakness/denervation/atrophy/reflex changes
then they *may* be considered malignant.
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Postby Pole on July 7th, 2003, 8:01 am

OK, seeing only single twich it is not possible to distinguish ALS twiching and BFS twiching. But according what Arron says and according to many other sources (take a look at post "information" in BFS question section posted long time ago - you have to go to page 6 or 7) ALS twiching differs from BFS twiching.
BFS twiches are stronger, often well visible, and the most important: come and go. ALS twiches are constant in every place they apear. If you go to neuro and say "I have fasciculations in left arm" he should hit or shake your left arm muscle and look if something is happen (he should look for fine movements under your skin). If there is nothing after shaking you do not have ALS fascics in this muscle.

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Postby Pole on July 7th, 2003, 8:11 am

All I said in previous post is true only for fascics from denervation/reinnervation. They do not come and go and they are constant after they first apear.

If we agree for a moment that stronger, random twiching may also be from ALS (as PNH in early stage of ALS) that you are right - that is impossible to tell if these twiches are benign or not.

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Postby KERRI on July 7th, 2003, 8:42 am

Pole wrote:All I said in previous post is true only for fascics from denervation/reinnervation. They do not come and go and they are constant after they first apear.

If we agree for a moment that stronger, random twiching may also be from ALS (as PNH in early stage of ALS) that you are right - that is impossible to tell if these twiches are benign or not.

Marcin



Pole stop pondering the truth is only time will tell, you must waite it out and pray.


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Postby Craig on July 7th, 2003, 9:23 am

Asterix made a good point. The piece that needs to be taken into consideration is that those people with ALS who presented with fasciculations first most likely did not have a clean EMG and/or clinical exam. This is important because it suggests that by the time someone is experiencing fasciculations there are other accompanying symptoms such as weakness, atrophy, EMG changes, etc. along with the fasciculations.

I don't know if PNH is an early sign of ALS, but I would venture to say it is not or that people on this site do not have PNH. If PNH were an early sign of ALS, I think you would see a substantially larger amount of people who would later go on to develop ALS on this site. I have heard of only one person in the past year who has developed ALS from a BFS diagnosis and we really don't know any details to accurately confirm this case. Furthermore, there have been a handful of "recovery" stories, which I imagine would be near impossible if PNH were a precursor to ALS.

I subscribe to the thought that ALS twitches are a result of the nerves dying and that they are USUALLY accompanied by other symptoms that I mentioned above. We may all be experiencing some type of "nerve excitability," but I do not think this is significant in itself. Most all of us have been reassured by a competent neurologist, a clean EMG and no symptoms of weakness and/or atrophy.
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Postby Pole on July 7th, 2003, 9:29 am

I dont say that every case of PNH is an early stage of ALS. Propably most of PNH cases are just PNH or BFS.

I wonder if in ALS it is often to have PNH as a first sign. That's all.

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Postby Arron on July 7th, 2003, 3:09 pm

Pole, I did just respond to that thread you are talking about. Go check it out.

You have to consider how rare ALS is in the first place, then subtract from that the incidences that make it even rarer (younger age groups, took a long time to show weakness, etc.) and take it at face value.

Sure there are going to be one or two cases out of the billions of people out there that are different or that present differently. Maybe that's because of other circumstances? Maybe because of the doctor himself? Maybe becaue of a mis-read or mis-taken EMG? I mean, who knows. You can only go by what is printed and written. And it's all written by people who can misread or over-read anything. ANY data or information or test results can be swayed one way or the other by all sorts of causes. Maybe an EMG machine wasn't calibrated correctly or had a bad connection between the leads and the machine? I don;t know..., or maybe some type of interfearance? I mean, who knows? Maybe the needle wasn't shoved into the muscles far enough? Maybe the needle had an oil film on it or something and it simply didn't conduct as well as it should have? Again, I don;t know, but there ARE reasons that "could" sway a test and in a report of "yes or no" results, could also sway the end-result.

There are ALWAYS circumstances that need to be considered until enough data is taken-in to show an average. Not just onc incident here and there. Again, you have to go with the masses and the general concencus of information we have on ALS and BFS for now.

Not all studies are factual. remember cold fusion? Remember the cure for AIDS with that Chinese Cucumber extract? Remember when we went to the moon? It's funny that we have telescopes powerful enough to see black holes bollions of light years away, yet you can't see the flag or the lunar lander on the surface of the moon... Just a funny thought :roll: ... Well, ALS is a rare and complex disease that unfortunately, isn't easy to diagnose in a timely manner, yet. And it's diagnosed, or rather "ruled-out" by tests and procedures that obviously aren't that up to par as far as technology in other areas are as of yet, which makes for a hellish waiting game and a whole slew of questions.

I wish there was a single, hard answer someone could give to say (for sure) whether we have BFS or early signs of ALS when we first present with twitches, but the fact is, it's still a waiting game. Luckily, with BFS, time is on our side.

We can look at single studies all we want, and we can look at rare cases or strange scenario's all we want too, and pose all kinds of questions, but that fact of the matter is, we are still behind in technology to not really know how to "accurately" diagnose or rule-out ALS yet in it's early stages. That seems to be a sucky fact, and it's why most of us are here looking for re-assurance and hopefully positive things to look for in our cases of twitching... such as no weakness or atrophy. For now, that's about all we can do besides offer support and knowing that we aren't alone in this strange world of twitching :)
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