3% with fasciculations before weakness

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3% with fasciculations before weakness

Postby lets twitch again on August 23rd, 2003, 9:34 pm

This study reveals a smaller percentage of Als patients that had fasciculations as a presenting symptom in comparisons to the well talked about 6.7% Canadian study.

Thought these stats are good news from what we have previously discussed.



Amyotrophic lateral sclerosis. A study of its presentation and prognosis.

Gubbay SS, Kahana E, Zilber N, Cooper G, Pintov S, Leibowitz Y.
All identified Israeli patients with amyotrophic lateral sclerosis (ALS) with onset of the disease from 1959 through 1975 (n = 318) were evaluated clinically. Most of our patients (63%) presented with weakness; only 10% presented with atrophy and 3% with fasciculations. In 31% of the cases, the onset of the disease was focal and 22% of the patients presented with bulbar signs, but only 6 patients presented with emotional lability (pseudo-bulbar). Twelve per cent of the patients presented with muscle cramps, pain or paraesthesia. Atypical signs such as motor cranial nerve lesion, dementia, sphincter disturbance and deep sensation loss are discussed. A relatively high proportion of our patients suffered from malignant tumour, but with no association with any specific tumour. The median survival time was 3 years. Patients with onset of their disease with bulbar signs had a shorter life expectancy (2.2 years): Twenty nine per cent of our patients survived for more than 5 years and 16% for more than 10 years.
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paraesthesia

Postby rosa on August 24th, 2003, 11:17 am

"Twelve per cent of the patients presented with muscle cramps, pain or paraesthesia... " This does not sound like what many claim that pain or paraesthesia are not symptomps of ALS? I have bad case of paraesthesia and aches going on with twitching :(
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Postby lets twitch again on August 25th, 2003, 10:54 am

Rosa
I am sorry that the post scared you. Pain in Als is 'very' unspecific and not a criteria in the diagnostic process. retrospectively I am a little puzzled the way the summary quoted the issue. Perhaps pain was directly associated with stiffness or/and cramping. Keep in mind that the majority of the people experience pain in one form or the other on a daily biases. Pain is the most common symptom of all.
Widespread Fasciculations on the other hand are a more specific symptom (Bfs,Als,lyme etc)... and that’s why John V. set up this supporting website.
with the study above we should be comforted a little more since it confirms that facsiculations before weakness in Als are very rare. (in retrospect of the 6.7% discussions we had in the past)
You are going to be alright!
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Postby dwl on August 25th, 2003, 11:04 am

Remember that this was a snapshot of patients as they walked in the door of the doctor's office. It does NOT take account of results of physical examination or emg. So, if you have seen a neuro and had a normal examination and/or emg then this stuff does not apply to you.

This paper would only be relevant to people who have not yet seen a neuro or had an emg.

David
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Postby rosa on August 25th, 2003, 12:49 pm

That's the problem. I did have neuro exam and my thumbs jumped more that they should during the reflex test. My hands are stiff everyday. My emg is scheduled for next month. Probably that's why I am freaking out.
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Postby dwl on August 25th, 2003, 1:35 pm

Rosa,

Is your doc a neuro or a pcp? I've had a look back at your symptoms and they sound much more like bfs, especially the facial twitching.

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Postby rosa on August 25th, 2003, 1:46 pm

David,
he is my neuro doc not pcp (BTW I have good health insurance plan where I do not need referrals to see specialists, so I practically do not see pcp unless I have runny nose :) ). He tried to calm me down by saying that paraesthesia is NOT a symptom of "you know what" and even did brain MRI (came back clean), but combined with other symptoms it scares me a lot. Thanks for responding. I guess after I have my EMG/NCV I will be either more calm or more hysterical - based on the results.
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Postby dwl on August 25th, 2003, 2:33 pm

Rosa,

My neuro said that he has never seen als twitching affect the face. He's a very experienced professor of neurology in a large regional teaching hospital. Hope this helps,

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Postby lets twitch again on August 26th, 2003, 10:04 am

"My neuro said that he has never seen als twitching affect the face."

Why would that be?, did your neuro have any explanations?
Interestingly, my MND neuro pointed out some chin fasc. I have not noticed myself. He tested me for Kennedy Disease and gave no furhter thought to Als. Since than I have had truckloads of facial fasciculations.
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Postby dwl on August 26th, 2003, 10:11 am

He didn't offer any explanation. I don't think it's really explainable, more of an observation. And it made me a little happier too!
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Postby Arron on September 3rd, 2003, 12:47 am

dwl wrote:Remember that this was a snapshot of patients as they walked in the door of the doctor's office. It does NOT take account of results of physical examination or emg. So, if you have seen a neuro and had a normal examination and/or emg then this stuff does not apply to you.

This paper would only be relevant to people who have not yet seen a neuro or had an emg.

David


That is about all anyone needs to know about these studies. It isn't the numbers that matter, it's HOW they got the numbers, and the results are usually VERY misleading!
dwl is SO right and hit the nail right on the head with this one :-)
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