WARNING don't read if you are afraid!!

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WARNING don't read if you are afraid!!

Postby reneeintx on October 6th, 2003, 8:56 pm

First of all, I saw this on mgh board from 1998. I was a little alarmed by it. I'm only asking for opinions,no bashing, please :)
I'm typing it as I saw it.

Folks the scope of criteria required for an ALS diagnosis has increased greatly. In fact, neuologists have coined a term
"ALS plus" to describe patients that have primary motor neuron degeneration symptoms along with symptoms such as the following sensory abnormalties (parathesia,dysthesias, tingling,burning, ect) gastrointestinal abnormalties, sleep disorders, autonomic nervous system disorders, various types of pain and finally, most notable dementia. It has been observed that many of the old standbys that have been used for differencial diagnosis in ALS are unreliable. For example, sensory symptoms are quite common on PALS. Many people that have been told that because they have sensory abnormalties that ALS is not a possibility. This is proven untrue. I bring this up so people will give their physicians a shove to update themselves.

Fasciculations, particularly those accompanied by other symptoms are a sign of a serious underlying disorder. This is not meant to alarm anyone, it's meant to awaken some. Not every fasciculator will develop ALS, but many will. People, please keep in mind that emg's are usually only useful in the LATE STAGES of ALS.

This post is challenging my sanity. What do you think of it? I'm alone and scared right now... I just had to talk(write) to someone.

I'm going to the neurologist for a followup appt. next Tuesday. I'm going to print it out and see what he says.

I also want to say that just because a post isn't all friendly,nice, and rosy doesn't mean it's bad or mean. It's just someone's opinion.

Renee :(
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Postby Jenn311 on October 6th, 2003, 10:05 pm

Renee, Renee, Renee....

Go back and read the article on BFS put out by the Mayo Clinic. The person that wrote this clearly has no reason to write it other than to scare people. You did not find it in a scholarly journal, and most likely it was written by someone with no medical knowledge or experience at all. If you look for stuff like this to scare you, you WILL find it. Take all the accumulative knowledge found on this board, all the medical journal articles written by the the experts, and none of them say, "most fasiculators will go on to develop ALS". No one here has ever, to our knowledge, gone on to develop ALS after a clean neuro exam and/or EMG. Forget this article, and get on with life. It's nonsense.

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Postby dwl on October 7th, 2003, 1:11 am

I completely agree with Jenn. This posting is utter nonsense. Just because it's posted on the mgh board doesn't mean it's true. I could post a message there saying that Arnold Schwarzenegger is the illegitimate offspring of Mickey Mouse and Madonna but that wouldn't make it true. Also, this post is from 1998. Funny that no other published articles supporting this have surfaced over the ensuing 5 years. My advice is to forget it - rubbish like this is what keeps people so scared of bfs.

You can have a look at my story at http://nextination.com/aboutbfs/forums/ ... php?t=1158 which covers stuff like this!

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Postby Brian_B on October 7th, 2003, 1:35 am

a quote from Adams and Victor's Principles of Neurology, which is the number 1 neurology journal


"A simple clinical rule is that fasciculations in relaxed muscle are never (my italics) indicative of motor system disease unless there is an associated weakness, atrophy or reflex change."
"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
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Postby Brian_B on October 7th, 2003, 1:41 am

Many people that have been told that because they have sensory abnormalties that ALS is not a possibility. This is proven untrue. I bring this up so people will give their physicians a shove to update themselves.



this is untrue, Mayo clinic, the number 2 ranked hospital in the world by U.S. news and World report

http://www.usnews.com/usnews/nycu/healt ... orroll.htm

Mayo clinic obviously has the study to prove that benign twitches leads to ALS is untrue




Fasciculations, particularly those accompanied by other symptoms are a sign of a serious underlying disorder. This is not meant to alarm anyone, it's meant to awaken some. Not every fasciculator will develop ALS, but many will. People, please keep in mind that emg's are usually only useful in the LATE STAGES of ALS.


this is also false, changes in EMG will be evident in a short time after ALS starts, not years later
"The only thing necessary for evil to triumph is for good men to do nothing"
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Postby dwl on October 7th, 2003, 2:30 am

People, please keep in mind that emg's are usually only useful in the LATE STAGES of ALS.


This is factually untrue. EMG's are extremely sensitive and will pick up problems many months before the onset of weakness.

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Postby Pole on October 7th, 2003, 2:33 am

I'm not sure about sensory stuff, but I'm sure that EMG will show ALS changes in very early stage of the disease (if done corectly). In advanced stages there is no need to do EMG - the symptoms are obvious.

So I think that this old post is B-U-L-L-S-H-I-T :)

regards
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Postby garym on October 7th, 2003, 11:05 am

I agree. This post is bull$#*!!!!!
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Postby reneeintx on October 7th, 2003, 12:23 pm

All of you are right! I see a stupid post and let all the TRUE information that I know about BFS go out the window.

Sometimes when my husband goes out of town(which is quite frequent) my mind gets the best of me, and I don't think rational. I believe this post threw me off my trusted path.

Today that post goes in the garbage with yesterdays news.

Thanks for not bashing me :) I have a hard enough time with self esteem as it is.

Renee
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Postby Nole on October 7th, 2003, 7:02 pm

Its BS!! Dont worry about what that posts says...the internet has alot of *beep* research on it, most is untrue!
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Hi

Postby KERRI on October 9th, 2003, 8:26 am

I have not been here so long I replied wrong. So I guess this was entered by a medical professional and we should all be prepared to die right. I do not know what to believe anymore. I mean I will never be free of this fear never.

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Postby dwl on October 9th, 2003, 9:33 am

Kerri,

This stuff was NOT posted by a health professional. It's a load of B-u-l-l. Believe it if you like, but nobody else does :-)

Did you have a nice honeymoon?

David
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Yeah

Postby KERRI on October 9th, 2003, 9:41 am

I had a great honeymoon and while I was there I found out that I am infact pregnant I must have taken the last test to soon or something because the doctor figures me to be 6 weeks. I was so happy but now I have a constant twitch in my left knew I mean it is going off constanly.

This scares me.

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Postby dwl on October 9th, 2003, 9:45 am

You'll have something else to worry about in about 7 1/2 months! Congratulations. You could look on it as a kind of distraction therapy :-)
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Postby Jenn311 on October 9th, 2003, 12:16 pm

Congrats Kerri,

When is your due date? Glad you had a nice honeymoon!

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