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Postby tlotoxl on November 20th, 2002, 10:37 pm

in addition to what arron wrote, if you imagine that by age 40, 6% of the population has experienced BFS to some degree, then it should hardly be surprising that 6% of the people who develop ALS also experienced twitches prior to developing weakness. of course 6% in the general population may be high, but mix that in with some people being out of tune with their bodies, and that 6.7% doesn't sound to be much of a stretch.
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Postby Asterix on November 21st, 2002, 7:53 am

tlotoxl,

this is a very intersting point:
I, too, have always wondered whether those 6.7% with fascics onset my be just coincidential.
(and again: this depends from the
frequency of BFS in the general population).

I could imagine that part of the observed fascics were indeed coincidential if the 6.7% number was obtained retrospectively, i.e. if the ALS patients were just asked: "which was the very first sx you remember"
Then it would be plausible to assume that a considerable fraction of the patients,just reported
some sporadic twitching prior to onset which, in reality, had nothing to do with their ALS.

But, unfortunately, AFAIK this was
not the way, the 6.7% number was obtained in the study: IIRC the
6.7% were those who PRESENTED with
fascics as the very first complaint
(and only physical sign at examination !) at the neurologist. (This, btw., also suggests that the actual number of those who first experienced fascics
(but did not go to the doctor before weakness) was higher than 6.7% )

So if the fascics were already severe enough to see a neurologist (probably referred to from the GP) then it's hard to imagine that the connection
to ALS was coincidental.
Furthermore, there was no comment
from the authors of the Study about the "coincidental fascics" possibility.

Nevertheless, we should keep in mind that the above considerations
did not include EMG or elapsed time
as a fcator.
So despite the above caveats, I still think that with a
clean EMG you have nothing to worry. Because that's what the other one of the two famous studies (the Mayo Study) has proved :)
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Postby Guest on November 21st, 2002, 11:21 am

tlotoxl

Where did you find the 6% before 40 stats...
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Postby Arron on November 22nd, 2002, 12:21 am

Asterix, no matter what that "6.7%" study said, facts are facts and twitches associated with the disease ALS are caused by one thing and one thing only, a SECONDARY reacton from dying nerves and muscle tissue, period. There is no grey area or wish-wash there. If there were any other twitches going on that made someone feel they needed to see a neuro and later ended-up developing ALS, then whatever those twitches were, they were obviously NOT benign. If they were benign, then it is 100% the opposite of what the famed Mayo Clinic study concluded that NO ONE with BFS EVER developed ALS.

You said; "IIRC the 6.7% were those who PRESENTED with
fascics as the very first complaint (and only physical sign at examination !) at the neurologist. (This, btw., also suggests that the actual number of those who first experienced fascics
(but did not go to the doctor before weakness) was higher than 6.7% )"

There is a key word in there and it is "complaint". Of course if a twitch presents and the weakness isn't "noticable" right away because the muscles affected aren't one's that are normally used for daily tasks, one might conclude that you could indeed have twitches that "presented" first, but again, the fact of the matter is, ALS twitches are caused BY dying muscles NOT the other way around. Twitches do NOT kill muscles. Twitches do NOT "cause" ALS and benign twitches have nothing to do with ALS in any way, shape or form. These are simple facts with no area for margin. That line between fact and fiction is razor sharp. Have you seen ANYONE on ANY of these forums, and we're talking some people that have twitched for 2 and 3 decades here, develop ALS or ever even have ALS for real? I have seen one person out of literally thousands and thousands actually have ALS BUT his symptoms were certainly in line with ALS and not BFS because his had was weak and he could no longer make a fist or move his fingers when he noticed his twitches and decided to post on one of these sites. If there are thousands and thousands of twitchers out there, then it is probably safe to say that "some of them" should have ALS according to that 6.7% study of twitches only as a first "detectable" sign. No one has posted anything like that nor has anyone even talked about someone like that. Maybe on the PALS site, yes, because if no weaknes was "noticed" at first yet a twitch was, that doesn't mean an EMG or a focused clinical exam wouldn't pick any other signs up. If there is twitching going-on caused by ALS, then an EMG would most certainly pick-up sharp waves and denervation, IF the EMG was done near the affected area. I mean, you can't test your big toe for ALS if you have a small twitch in your throat. Several areas need to be tested and does that 6.7% test actually give specifics of that? Nope. Does it say an EMG was ever even performed? Nope. Does it say that a "thourough" exam was performed or was it just a basic evaluation of strength by maybe a doctor that was late for lunch or golf? Who knows? I can tell youi this though, there is at least 6.7% of the doctors out there that couldn't find their way out of a paper bag and got their license and credentials out of a Cracker Jacks box and that in itself may explain why only fasciculations were the only presenting symptom.

Also, I have heard a lot of talk lately about Gulf War Veteran's being at a much higher risk of developing ALS than the average "Joe". There were several articles by world renowned neuro's on the subject of "who get's ALS and why" and the conclusion was that it was much more common for people with a lean, slender build and long muscle fibers to develope ALS than someone that is over weight or out of shape. Well, I haven't seen too many fat, out of shape soldier's out there. Officer's maybe, but not real soldiers that train daily and actually fight in the field instead of sitting in a hidden bunker, eating donuts and watching the action on closed circuit satalite TV. This "may" be one of the reasons why a higher percentage of soldiers develop ALS.
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Postby Nole on November 22nd, 2002, 1:26 pm

Thank you Aaron!! I was looking at the other posts and thinking what are they talking about? I have been twitching for 6 months now and am almost totally free of the twitches. The onset of my symptoms happend one day with fasc. all over, so yes BFS can start like this and over time they have become almost nothing. So it is true that they can start very strong and all over the body one day for no apparent reason. The most important thing to do here is to relax and stop over analyzing. You will cause symptoms to occur that may not even be there. Twitching without weakness is NOT ALS. Live your life, be happy, find a hobby, and stop worrying. Thanks for putting things back into perspective again Aaron.
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Postby Asterix on November 22nd, 2002, 1:49 pm

Nole,

sorry for the misconception:
my posting was not at all meant
to worry/scare anyone.

I totally agree with Arron:
Really no need for concern if fascics are due to BFS as confirmed by EMG :)
I tried to emphasize this at the end of my posting to show that there is no need to worry for BFSers.

This was only meant to be an "academic" discussion about some interesting statistical details of the "6.7%" study.


:)
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Postby Arron on November 22nd, 2002, 3:12 pm

Asterix, you did a good job posting and I wasn't complaining or trying to undermine what you were saying. I just wanted to point-out that even though a study was done and there were 6.7% of the total ALS patients that "complained" of twitches only as a first symptom, that doesn't mean that their doctor was actually paying attention or doing a good job or that maybe an EMG was or wasn't done or in the right places.

I just didn't want anyone to get scared because of one simple study that might very well have been taken out of context and we ALL know how ANY study can be swayed or tainted...we've all seen studies where doctors stuff a 1 oz. mouse with 2 oz. of sacchrin and make it cause cancer. I mean, if we ate 5 pounds of apples a day, we'd probably end-up with some kind of stomach or intestional cancer as well. It's all has to be taken into perspective and at face value. I mean, who can even eat 5 pounds of anything in one day and what mouse can eat 2 times his body weight (in sacchrin only) in one day, day after day. OF COURSE the mice got cancer, duh! Great studies huh? And that my friend, is why all of that old information about so many common things causing cancer have been recalled. I believe the 6.7% study is every bit as tainted and full of inaccurate information and with ALS twitches being the way they are, it is obvious the test was incorrect...
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Postby Nole on November 23rd, 2002, 11:58 am

I have never had an EMG nor do I need one according to my GP. I have never seen a neuro either. All I know is that I twitch sometimes, have no weakness, and am still able to do all that I used to. Actually, now symptoms are barely there. I do have the occasional BFS days of fatigue and more twitches, but who doesnt have tired days with our schedules. Dont worry you didnt scare me with your stats because I know I am doing as well as expected and I know how I feel. Just wanted to make sure no one else out there gets freaked out. Use BFSers tend to be hyochondriacs ya know? Be happy, live life.
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Postby nathan on December 31st, 2002, 9:32 pm

Sandy,
I just read your post of Nov. 20 and you describe my symptoms exactly. I am curious to know the results of your emg. Mine is scheduled for late January. Thanks.
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Postby paranoid on January 1st, 2003, 10:35 am

Hi Nathan,
I had an EMG and Nerve Conduction Study on Dec !6 and both were fine. One Fascis was noted on my right leg. It was very interesting. While the technician was testing my leg I heard a continuous "thump, thump,"( for those who have had children, it sounded exactly like a fetal heartbeat) I asked the tech what it was and she said it was a motor unit continuously firing even though I was supposed to be in a resting state. It did not indicate a disease process but made it harder to accurately read the test. Guess my nervous system just cant relax. One other interesting thing: the day of the test my symptoms were really flaring up, the perfect time to be tested. In fact, my thumb was moving up and down non stop. When the EMG was performed in that area not a single fascis showed up on the test even though the tech could observe them happening as she was performing the EMG. I thought this was incredibly strange. Anyway, I feel much better now. Now if I could only shake the feeling that it is something else (maybe spinal tumor) but the neurologist didnt think any furthur testing such as an MRI would be required unless my symptoms changed. He diagnosed me with plain old BFS. The only thing that bothered me was I felt he didnt grasp the intensity of my cramping,twitching. I believe he felt I was a hypochondriac and that what I was experiencing was the everyday twitches that the general population gets from time to time. ( we all know that this is definitely different!) Although glad to have positive results from my testing, I wish I had not left with the feeling that I was being childish about worrying about my twitches. Good luck with your testing in Jan. The waiting is definitely the the hardest part. I'm sure you are fine!
Sandy
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Postby twitcher(nli) on January 1st, 2003, 3:24 pm

Hi Paranoid,
I'm glad to see your EMG came back clean! I remember you being quite worried about it. It's funny, I twitch like crazy with a little cramping, but when I had an EMG done at the Cleveland Clinic everything was normal. No facsics, cramping....nothing. Now my knees look thinner and I'm back to some slight worrying. I'm starting to believe my shrink when he says it is all caused by OCD. C'est la vie.
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Postby paranoid on January 1st, 2003, 5:28 pm

Hi Twitcher (nli) ~ good to see you posting again. I know you gave it a break on the advice of a health care professional to help you deal with your OCD. My question to you is... have you learned any techniques to help you cope with your obscessions ? If so could you share them with me. I tried medication (Paxil) but quickly gave that up as it seemed to make me worse. You are right though, I dont notice my twitching nearly as much now that I have had my EMG. They are still there 24/7 but I am not focusing all of my energy on observing them.
All the best to you for the New Year! You have been such a help to me in the past when I really needed support!
Sandy
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Postby nathan on January 1st, 2003, 8:03 pm

Sandy,
I just read your post of Nov. 20 and my symptoms are also diffuse twitching and a "heavy" right leg. Apparantly, "heavy" is not an easily understood adjective in this context as I only get puzzled expressions when I use it. My emg is not until late January. I was curious of the result of yours. Thanks.
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Postby paranoid (Sandy) on January 2nd, 2003, 10:53 am

Nathan,
I posted earlier in this thread about my test results. Yes it is difficult to explain the "heavy" feeling. To me it is like the leg can still do anything asked of it but it seems to take more effort than with the left leg. For example, if I am walking up a steep hill its as if I have two different people's legs... my own left leg that fits my 115lb frame and a right leg that belongs to someone about 250lbs!
Regards,
Sandy
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Postby twitcher(nli) on January 2nd, 2003, 8:11 pm

Hi Sandy,
yes, I have learned a few strategies that have helped quite a bit with my health obsession.

Really, there are two things that I do to help alleviate the constant fear. The first technique is called exposure. This is the hardest one, but is probably the most relevant to this group. What it involves is one sitting down in a room alone and imagining the worst. I have to imagine that I have ALS and force myself to get anxious. I have to imagine slowly wasting away, having to rely on others for my most basic needs, being unable to move or communicate, the inability to breathe, etc. I imagine the worst possible scenerio and allow myslef to get as anxious as possible. One would do this for ~15 minutes at first. Eventually, you try to get to a point where you can feel your anxiety level drop while you're doing the exposure. This drop in anxiety becomes your stopping point in future sessions.

The other technique is to stop checking your body. In the guise of OCD, I was told to rationalize that my thoughts that I was getting weaker were all caused by OCD, not ALS. Everytime I had a feeling of weakness or caught myself testing my strength, I had to tell myself that it was OCD and not ALS. This one had the biggest immediate impact. This also goes for checking for muscle atrophy. If I feel the urge to check a part of my body, I'm supposed to recognize it as an obsession and then try to replace the compulsion with something fun. Even if I break down and do check, I have to try to wait at least 15 minutes before I give in.

So does it work??? Yes, without a doubt. 6 months ago, I was a mess. Now, I can deal with the fear a lot better. I have good days and bad, but the majority are good and getting better. Most of this revolves around accepting the fact that no matter how much we worry about something (ALS), we can't prevent it from happening. And if I do have it, why would I want to ruin the precious time I have left with worry. I've been trying to live in the moment more and not always fearing what MAY happen in the future.

I have more, but I gotta run...talk later.
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