TWITCHES ARE NOT A SIGN OF ALS!

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TWITCHES ARE NOT A SIGN OF ALS!

Postby Arron on May 29th, 2008, 11:16 pm

Too many people on here believe BFS twitches and ALS twitches are somehow related, or at least related "disease" wise. Nothing could be farther from the truth! They have NOTHING to do with each other, what so ever!

Saying BFS and ALS have twitches in common is like saying people that shake when they are scared (trembling) is a sign Parkinson’s Disease. After all, they both have shaking as a common symptom, right? WRONG! Trembling from anxiety or from being scared has NOTHING to do with shaking from Parkinson's disease, nothing what so ever! Just because you shake when you get scared doesn't mean you are shaking for the same reason you shake when you have Parkinson's!!! Comparing BFS twitches and ALS twitches is absolutely NO DIFFERENT, and they have about as much to do with each other as shaking from fear and from Parkinson's!!! Comparing the two is completely frivolous and useless.

The twitches from ALS are not only COMPLETELY DIFFERENT in the way they look, feel and appear, they are COMPLETELY DIFFERENT in WHY they are happening in the first place.

People shake and tremble. Some get the shakes without even being scared. That too is a BENIGN syndrome called Familial Tremors. It has ABSOLUTELY NOTHING TO DO WITH PARKINSON'S Disease, and they are in no way related or even similar in size, shape, frequency or cause. Comparing tremors and shaking to Parkinson's is no different than comparing BFS twitches and ALS twitches.

Everyone needs to get off the "twitching" kick and quit comparing BFS twitches to ALS twitches because twitching isn't even a "sign" of ALS!

Trying to self diagnose yourself with or without ALS by "twitches" is like trying to self diagnose yourself by comparing a cough from a dry throat to a cough caused by lung cancer. They both involve a cough, but for two ENTIRELY DIFFERENT REASONS and from two ENTIRELY DIFFERENT SOURCES.

Again, just because "shaking" is a common symptom of Parkinson's doesn't mean it has anything to do with BENIGN shaking that older people get, or how you get when you are scared or nervous. The root cause between ALL of those "symptoms" are SO far opposite of each other, it isn't even funny.

The question is, why do so many people keep insisting on relating twitches with ALS when SO MUCH information is here to teach them different???

Here is a quote from a recent PM I got:

I was struck with your "overall picture" comment; that is really what the Neurologist looked at. As a matter of fact, when I told him my Lat twitch had been there for over 3 months he didn't say anything. He also wasn't concerned about my Pec twitch that lasted for weeks. He asked me some questions like "have you experienced a limb weakness?" or "have you had trouble speaking or griping objects?" Then, he stepped out of the office while I put on my gown for the examination.

When he came back he manipulated my ankles and wrists asking me to apply resistance; he spread my fingers, checked all kinds of reflexes, used pins and needles and asked if I could feel the poke. Also, he had me touch my nose with my eyes closed, do varioius gripping exercises, and make me stand on one foot and do some walking drills. There was a few more things he did and it all lasted about 45 minutes. The actual twitching...well, I've already said what he said about that and he really didn't pay them a lot of heed. He was DEFINITELY looking at other stuff, not the twitches. His view was again like you said...he seemed to be getting an "overall picture" of my neurolgical condition to do the assessment and wasn't focusing on my complaint of twitching.


His neuro wasn't concerned about the twitches for a reason..... because they are NOT a symptom of ALS! It is the Weakness, the loss of muscle control. The loss of being able to do something simple that you could so with your eyes closed. The OVERALL picture is what they are looking at, not the "twitches". This is why SO MANY neuro's say they can tell an ALS case the minute it walks through the door, because the patient isn't walking or moving the way they should be. That is a definite sign! Put it this way... it isn't because they can see the twitches from across the room!

The kind of signs they are looking for do not come and go. They are not here today and gone tomorrow. It is not weak "feelings" yet you still can do everything you were always able to do. Clinical weakness is PERMANENT and it progresses! Losing the ability to grasp and hold your tooth brush doesn't go away, it only gets worse to the point where you can no longer raise your arm to get the brush up to your face, and even worse from there! BFS symptoms however DO come and go. They ARE here today and gone tomorrow. You DO get weak FEELINGS are rubbery legs / limbs, but you still retain your actual strength. There is a HUGE difference between FEELING weak and having fatigue as compared to clinical weakness and loss of muscle control. THIS is what neuros are looking for, NOT "twitches".

I hope that helped shed some light on it.
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby raindog on May 30th, 2008, 6:50 am

Top post ..and spot on. Once i got my neuro visit and he reassured me that i was strong..ive not looked back since.

Changed my lifestyle, diet etc twitches cramps fatigue brain fog have are almost non existant...ok i get the odd twitch, but hey i'm as strong as a horse and thats what counts.

Dont let this condition rule your life..put it out the back door and move on dont let it stop you living ...it really is easy

Take care all
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby backagain on May 30th, 2008, 11:01 am

Twitches are a symptom of ALS, but the point you are making is that they are not THE SYMPTOM of ALS. A twitch can be caused by lots of things, but very very rarely are they the presenting symptom in an ALS patient. I think you are dead on in saying that twitches are no more a sign of ALS as a cough is a sign of lung cancer.
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby c4110djh on May 30th, 2008, 4:33 pm

Wonderful, informative post. The whole "picture" is what all of my neuros have looked at over the years. This is why none have done an EMG, b/c they knew I did not need one. l'm not in the least criticizing those who have them done---if my BFS had started "post internet days" I'm sure I would have insisted on one as well. Thank you so much for such a common sense posting. Best Wishes, Denise
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby Arron on May 31st, 2008, 10:46 am

Backagain, you are WRONG.. Sorry dude. ALS NEVER presents with twitches. How can it when the twitches are a SECONDARY symptom CAUSED by dying muscle and disconnecting nerve pathways?

When a neuro says (and 99% of them say this) they can see an ALS case as soon as it walks through the door, they aren't seeing the twitches from across the room. People with BFS seeing their neuro's for the first time often wonder why the doc isn't interested in the twitches and is looking for other things. YOU (the patient) are focused on the twitches but the doctor is not. There is a reason for that, and that reason is.... twitches are not the symptom they are looking for which is why most neuros ignore most of what you tell them about your twitches.

This is SOOOO common with about 99% of the people that see a neuro and wonder why they weren't interested so much in the twitches... maybe its because the neuro also knows that twitches are NOT the sign of ALS?

Don't try to dispute or second guess what I am saying. I have been around the block too many times and have interviewed too many neuros over the past decade plus to not know what I am talking about. It is a fact that twitches are not a valid sign of ALS, period.
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby backagain on June 2nd, 2008, 1:53 pm

Arron wrote:Backagain, you are WRONG.. Sorry dude. ALS NEVER presents with twitches. How can it when the twitches are a SECONDARY symptom CAUSED by dying muscle and disconnecting nerve pathways?

When a neuro says (and 99% of them say this) they can see an ALS case as soon as it walks through the door, they aren't seeing the twitches from across the room. People with BFS seeing their neuro's for the first time often wonder why the doc isn't interested in the twitches and is looking for other things. YOU (the patient) are focused on the twitches but the doctor is not. There is a reason for that, and that reason is.... twitches are not the symptom they are looking for which is why most neuros ignore most of what you tell them about your twitches.

This is SOOOO common with about 99% of the people that see a neuro and wonder why they weren't interested so much in the twitches... maybe its because the neuro also knows that twitches are NOT the sign of ALS?

Don't try to dispute or second guess what I am saying. I have been around the block too many times and have interviewed too many neuros over the past decade plus to not know what I am talking about. It is a fact that twitches are not a valid sign of ALS, period.


I thought that is what I said as well...Dude. And you are not the only one who has been around the block dude.

CYA dude.
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Re: TWITCHES ARE NOT A SIGN OF ALS!

Postby SwedishGirl on June 6th, 2008, 5:09 am

You go Arron! I love your posts ;-)
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Re: TWITCHES ARE NOT A SIGN OF ALS!

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