"Nervous" arms will twitch when used

Information about how to manage or reduce the severity of BFS symptoms

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Re: "Nervous" arms will twitch when used

Postby aussie sufferer on June 22nd, 2011, 4:25 am

Barbie I am exactly the same 19 months in (well for the most part anyway). I guess for some it is a tougher road than for others. Not sure where you get the 4 years from for TD?? I get the 'nervous legs' thing ( with acute anxiety-dosen't need much!)..but that just means super hyped up leg twitching for me.
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PS Just read the entire thread....whoa...I am glad i just answered the question and supported barbies last post. Another bun fight..I'm over it... Is attack the best form of defence? Sympathies to TD....
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Re: "Nervous" arms will twitch when used

Postby jcrissman2 on June 22nd, 2011, 9:19 pm

It's important that everyone continue to pay attention to the people most likely able to accurately diagnose them. In other words, your own doctor. If you've been checked out by your GP and she says benign then it's probably benign. If you've been checked out by a neurologist and he says benign then take that to the bank. If you've had an EMG and that says benign well throw a party because you're just fine.

A study or two interpreted over an Internet forum by someone who has a self admitted obsession and fear of ALS does not come close to trumping direct interactions with your doctors.

There have been assuredly hundreds of studies published about MND in the decades it has been studied. Some of them are great, some of them are good and some of them are flawed. Think back to your studying of basic statistics. Any study has the potential of falling prey to a Type 1 or Type 2 error. It is infinitely more reasonable to trust in your doctors than to be made nervous about reports of a study or two. Be at peace.
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Re: "Nervous" arms will twitch when used

Postby Noturnus on June 26th, 2011, 11:36 am

dARR wrote:For anyone freaking out I can totally reassure you that through my university I have complete and unrestricted access to every journal article ever published on a.l.s.

I have never ever read a serious article that stated that als is a concern for us twitchers after a period of 4-5 years.
The severly flawed walton survey found FOUR people (who suffered from SEVERE cramping and had never had an emg) that went on to develop als after a period of time. This survey is flaed for many reasons but the main ones are that: NOBODY else anywhere in all the many years since walton has ever found a similiar finding and b) it is a form of post hoc theorizing and c) it is a victim to the sharpshooter fallacy.

The other survey that is being referenced (I believe as I do not accept or recieve pm)is one that found that a fraction of pnh people go on to develop illnesses such as cancer and certain more serious neuropathies. The chances as far as I can tell are only a fraction of a fraction above that they would be if u were not twitching. This survey set the upper time limit for these NON ALS illnesses at 5years. Just FYI Harvard sets the time limit on twitching being non als related at 3 months without weakness, Uof Peking puts it at 6months and others up to an absolute maximum of 1 year. Als kills most people within the timeframe twitchydoc is talking about.
Please remember always that the upper upper limit is one year...and the only people to ever twitch for that long and still have the big one were all 45+.
If u cant produce a twitch on call right away to show a doc its benign.
if your constant twitches are on ur calfs and ur under 40: its benign.
if you have been cleared by a doc or emg at any time..guess what? its benign.


I can provoke twitches by poking my thenars to show the doctor.
I almost never twitch on my calves...
I am under 40 (34 years)
had 6 clean emgs.
but the "no twitches on the calves" thing and the "induced by poking" twitches on my thenars drives me crazy.
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Re: "Nervous" arms will twitch when used

Postby TwitchyDoc on June 26th, 2011, 12:28 pm

Noturnus, inducing fasciculations in thenar muscles has nothing to do with ALS. This only proves hyperexcitability and its most common place for doctor to test it. If I poke my wife's thenars often will twitch. It depends where you hit, the correct place is the lower lateral part. This just proves your peripheral nerve system is easily excitable. If you hit your deltoid muscles strongly enough and in correct place, I bet they will do the same. Nothing to worry about.
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Re: "Nervous" arms will twitch when used

Postby Noturnus on June 26th, 2011, 4:22 pm

TwitchyDoc wrote:Noturnus, inducing fasciculations in thenar muscles has nothing to do with ALS. This only proves hyperexcitability and its most common place for doctor to test it. If I poke my wife's thenars often will twitch. It depends where you hit, the correct place is the lower lateral part. This just proves your peripheral nerve system is easily excitable. If you hit your deltoid muscles strongly enough and in correct place, I bet they will do the same. Nothing to worry about.


Man, it is EXACTILLY on the lower lateral part. If I poke somewhere else it does not twitch. It is only on the lower lateral part. There are times when I poke hard and it does not twitches. Other times it twitches with very few pokes.
I cant induce twitches on deltoids.

My worst places in order are the arches of my feets, triceps, biceps, tights and foreams.
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Re: "Nervous" arms will twitch when used

Postby Noturnus on June 26th, 2011, 4:29 pm

jcrissman2 wrote:It's important that everyone continue to pay attention to the people most likely able to accurately diagnose them. In other words, your own doctor. If you've been checked out by your GP and she says benign then it's probably benign. If you've been checked out by a neurologist and he says benign then take that to the bank. If you've had an EMG and that says benign well throw a party because you're just fine.

A study or two interpreted over an Internet forum by someone who has a self admitted obsession and fear of ALS does not come close to trumping direct interactions with your doctors.

There have been assuredly hundreds of studies published about MND in the decades it has been studied. Some of them are great, some of them are good and some of them are flawed. Think back to your studying of basic statistics. Any study has the potential of falling prey to a Type 1 or Type 2 error. It is infinitely more reasonable to trust in your doctors than to be made nervous about reports of a study or two. Be at peace.


TwitchingDoctor is telling the truth. I read the article and it is very clear when it says that 5 years is the minimal follow up time. I don't know if the paper is serious, if it reflects the truth. But it is very clear. It tells about 4 people who twitched for 2, 3 years with normal emgs... and after that developed mnd. One one them was 37 years old at the first complain and another was 40 years old.
All four had cramps at a regular basis. And to some the cramps where the main complain.
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Re: "Nervous" arms will twitch when used

Postby cenkay.a on June 26th, 2011, 6:14 pm

/
Last edited by cenkay.a on January 21st, 2012, 2:34 pm, edited 1 time in total.
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Re: "Nervous" arms will twitch when used

Postby wanderer on June 26th, 2011, 6:23 pm

Noturnus wrote:
jcrissman2 wrote:It's important that everyone continue to pay attention to the people most likely able to accurately diagnose them. In other words, your own doctor. If you've been checked out by your GP and she says benign then it's probably benign. If you've been checked out by a neurologist and he says benign then take that to the bank. If you've had an EMG and that says benign well throw a party because you're just fine.

A study or two interpreted over an Internet forum by someone who has a self admitted obsession and fear of ALS does not come close to trumping direct interactions with your doctors.

There have been assuredly hundreds of studies published about MND in the decades it has been studied. Some of them are great, some of them are good and some of them are flawed. Think back to your studying of basic statistics. Any study has the potential of falling prey to a Type 1 or Type 2 error. It is infinitely more reasonable to trust in your doctors than to be made nervous about reports of a study or two. Be at peace.


TwitchingDoctor is telling the truth. I read the article and it is very clear when it says that 5 years is the minimal follow up time. I don't know if the paper is serious, if it reflects the truth. But it is very clear. It tells about 4 people who twitched for 2, 3 years with normal emgs... and after that developed mnd. One one them was 37 years old at the first complain and another was 40 years old.
All four had cramps at a regular basis. And to some the cramps where the main complain.



And did you happen to read Double D post?



"I don't have much time because I am gone for a week. However the report is horrible misleading and the Doctor who came up with the 4-5 years got BLASTED BY the medical field.

Only 1 case went longer then a year and he had been diagnosed with a nerve disorder. Plus he had a family history of nerve disease.

TD does not even fully believe the report himself.

I will comment in a week

DD"


Oh yeah you read the article blah blah..... :roll:
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Re: "Nervous" arms will twitch when used

Postby wanderer on June 26th, 2011, 6:30 pm

cenkay.a wrote:
Noturnus wrote:
jcrissman2 wrote:It's important that everyone continue to pay attention to the people most likely able to accurately diagnose them. In other words, your own doctor. If you've been checked out by your GP and she says benign then it's probably benign. If you've been checked out by a neurologist and he says benign then take that to the bank. If you've had an EMG and that says benign well throw a party because you're just fine.

A study or two interpreted over an Internet forum by someone who has a self admitted obsession and fear of ALS does not come close to trumping direct interactions with your doctors.

There have been assuredly hundreds of studies published about MND in the decades it has been studied. Some of them are great, some of them are good and some of them are flawed. Think back to your studying of basic statistics. Any study has the potential of falling prey to a Type 1 or Type 2 error. It is infinitely more reasonable to trust in your doctors than to be made nervous about reports of a study or two. Be at peace.


TwitchingDoctor is telling the truth. I read the article and it is very clear when it says that 5 years is the minimal follow up time. I don't know if the paper is serious, if it reflects the truth. But it is very clear. It tells about 4 people who twitched for 2, 3 years with normal emgs... and after that developed mnd. One one them was 37 years old at the first complain and another was 40 years old.
All four had cramps at a regular basis. And to some the cramps where the main complain.


this is lovely news to me

i dont know what im doing on this forum now, its just giving me more and more anxiety lol
before anyone says 'leave then' ... i will :)


Leave! And I seriously dont mean it in a rude way cause this is really the last straw for me as well. Yeah congrats to the guys who has clean EMGS follow up after 5 years yeah. :roll:
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Re: "Nervous" arms will twitch when used

Postby DoubleD on June 26th, 2011, 9:27 pm

sorry to leave this place on such a low/high note. For those who care to know I was in Los Angeles, Cal for a weeek on a missions trip. I took my youth group there. Saw terrible suffering, but was able to help out where I could. BTW I walked all over the place and worked my twitchy butt off. I have never hurt so much but felt so good. :)

First: Moderator's please do not take this thread off. This is a good lesson for all of us.

Second: I stand by my take on the survey. BTW ALL the patients were NOT given a proper emg. The guy who did the tests and survey is the ONLY neuro who suggests waiting 4-5 years. That not only makes zero sense because none of the subjects went that long before developing als. (only 1 went past a year and he was not a credable test) but if we stop and really think about it it is laughable.

Think about those percentages! ONE neuro out of HUNDREDS OF THOUSANDS makes a personal opinion and it sends us over the cliff. ONE NEURO OUT OF HUNDREDS OF THOUSANDS! Its not like 10% or 30% made that claim. Its more like .00000000000000001%.

Think about it this way. If ONE single police cheif, in the whole world, makes a claim that based on the fact (or loose evidence) that a good cop went bad after a couple of years, then EVERY cop in the world will eventuallly go bad. Would you believe him?

OR If you were a cop, would you start to think that just because this police cheif says he knows YOU are going to turn corrupt, even though he has never seen you or knows anything about you, just because this one guy did, would you then start to fear [b]you will turn bad?[/b]?


I understand everyone's fears, But you have to take a little medicine here. Remember to; weigh the facts, trust the majority, trust the reliable facts, trusts the vets, and trust your neuro!

Put this post in your rearview mirror. That includes you TD.

Onward to bigger and smaller things! :D

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: "Nervous" arms will twitch when used

Postby garym on June 27th, 2011, 3:16 pm

TwitchingDoctor is telling the truth. I read the article and it is very clear when it says that 5 years is the minimal follow up time. I don't know if the paper is serious, if it reflects the truth. But it is very clear. It tells about 4 people who twitched for 2, 3 years with normal emgs... and after that developed mnd. One one them was 37 years old at the first complain and another was 40 years old.
All four had cramps at a regular basis. And to some the cramps where the main complain.


Here is the answer to this question, as I see it, and it is very simple. Just because you have BFS doesn't mean that you are immune to ALS/MND. Any of us COULD come down with als at anytime, just like any other person on the planet. The key is that there is no INCREASED risk of als amoung bfs sufferers. I'm not surprised or worried that some doc somewhere found a few cases of people with BFS that went on to develop mnd. It is going to happen, for some unlucky BFS'ers....but long term studies have shown there isn't a correlation between bfs and als (see the mayo study). Again, we as a group are not immune to ALS, but bfs doesn't turn into als....we're just as likely to develop als as the general public, no less no more!

Take care,
Gary
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Re: "Nervous" arms will twitch when used

Postby jcrissman2 on June 27th, 2011, 8:23 pm

Gary - spot on. Just like some people who twitch get breast cancer.
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Re: "Nervous" arms will twitch when used

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