"Nervous" arms will twitch when used

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Re: "Nervous" arms will twitch when used

Postby Barbie800 on June 19th, 2011, 10:28 am

Now I'm seriously freaked out. I think it's time to take a break from this place.
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Re: "Nervous" arms will twitch when used

Postby mommylondon on June 19th, 2011, 11:04 am

TwitchyDoc wrote:dARR, I will not take into the public. Contact DoubleD if you want to know more...its not one or two cases and its not "some" study.

Enough said, no need to scare anyone.



You already are, and have... many times with this crap TD. I have to agree with Barbie, this is becoming ridiculous and so incredibly pointless, and I also think it is time for a break from this place. At times its so incredibly supportive, and other times scary and almost dangerous.

TD whats the point of saying you are taking it into private, everyone that has been following this thread will be sitting around wondering and worrying about what is being said, because obviously it isnt good. :?:

Take care everyone, I'm out of here for a while.


Robynn :?
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Re: "Nervous" arms will twitch when used

Postby TwitchyDoc on June 19th, 2011, 11:17 am

I have myself asked for removal of this thread. With Dd,we discussed mainly that walton study,so no need to freak out. this has been discussed here before and my neuro just follows its recommendation regarding the follow ups. Why upu should be worried? Pepinototal was told 3 years,that was not strange?
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Re: "Nervous" arms will twitch when used

Postby wanderer on June 19th, 2011, 11:34 am

Barbie800 wrote:Now I'm seriously freaked out. I think it's time to take a break from this place.


I dont need a break but I am out of here for good. Take care all I came here for support and not this garbage

See ya
Last edited by wanderer on June 19th, 2011, 12:16 pm, edited 1 time in total.
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Re: "Nervous" arms will twitch when used

Postby dARR on June 19th, 2011, 12:06 pm

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.
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Re: "Nervous" arms will twitch when used

Postby wanderer on June 19th, 2011, 12:18 pm

TwitchyDoc wrote:I have myself asked for removal of this thread. With Dd,we discussed mainly that walton study,so no need to freak out. this has been discussed here before and my neuro just follows its recommendation regarding the follow ups. Why upu should be worried? Pepinototal was told 3 years,that was not strange?


Whats the point of removing it? The damage is already done. And even if it is removed you will most probably post again of another twitch you have and of cos be a smart ass and tell everyone off about your latest findings.

Good for you. I am outta here.
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Re: "Nervous" arms will twitch when used

Postby TwitchyDoc on June 19th, 2011, 1:06 pm

dARR: All of them had EMGs done, please read it again. I would not react, but I cant stand if you say something that is not true. In addition, some had serial EMGs.
wanderer: this study has been discussed here before, I only mentioned here in response to Barbie as my neuro /specialists/ follows it and wants to follow me at least one more year..just to be sure.

There is no reason to freak out, many times has been repeated that all these and previously reported cases had bad cramping together with fasciculations and mostly localized, not widespread.
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Re: "Nervous" arms will twitch when used

Postby DoubleD on June 19th, 2011, 3:34 pm

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
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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 wanderer on June 19th, 2011, 5:25 pm

TwitchyDoc wrote:
There is no reason to freak out, many times has been repeated that all these and previously [b]reported cases had bad cramping together with fasciculations and mostly localized, not widespread
[/b].


:roll: wow......
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Re: "Nervous" arms will twitch when used

Postby mommylondon on June 19th, 2011, 7:00 pm

See...all of that for nothing... :roll:


I hope Barbie comes back and reads what Darr and DoubleD said. I'm glad they cared enough to take the time to sift that out for everyone...again :wink:


Hopefully that will be the last time that comes up :D
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Re: "Nervous" arms will twitch when used

Postby Barbie800 on June 19th, 2011, 7:29 pm

mommylondon wrote:See...all of that for nothing... :roll:


I hope Barbie comes back and reads what Darr and DoubleD said. I'm glad they cared enough to take the time to sift that out for everyone...again :wink:


Hopefully that will be the last time that comes up :D



Yes, Robynn I'm here. Thanks to Darr and DoubleD (who also PMed me) I see how silly I've been. But it just shows you how a single comment can cause someone to get scared. I've been at this for awhile and can't imagine being a new person and reading this. I've worked hard to overcome my anxiety with this condition but unfortunately I have setbacks every now and then and reading what TwitchyDoc wrote, just got the wheels in my mind turning. I should have known better. I hope we can all put this to rest.
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Re: "Nervous" arms will twitch when used

Postby mommylondon on June 19th, 2011, 7:47 pm

I'm glad you saw it Barbie, it upset me that this thread bothered you and some others as badly as it did (myself included). You are rite, even when we are almost 2 yrs in on all this, reading something like that can be all it takes to get the worry wheels turning again, and you are rite, I feel so bad for the newbies who read that. Hopefully what DoubleD and Darr said will be enough to put their fears at ease.


Recovering from the mental aspects of BFS can be a challenge, so its completely understandable to have some set backs occasionally, but thats where we should be here to support eachother, not to create doubt and provoke fear.


Thank you Darr and Thank you DoubleD for taking the time. Have a safe trip DoubleD.

Take care Barbie

Robynn :D
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Re: "Nervous" arms will twitch when used

Postby Günther on June 20th, 2011, 4:12 pm

in als it is ABSOLOUTLY normal, that the muscles are twitching after usig!! Ich am on old twitcher...
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Re: "Nervous" arms will twitch when used

Postby ImOK on June 20th, 2011, 6:47 pm

TD - I told you this would happen if you weren't absolutely clear on what is said and careful how it can cause some to see implications where they don't exist. Saying stuff like that in here is like bringing up unexplained noises under the bed, or weird shapes in the clothes closet to a kid at bedtime and then leaving them to deal with it. :evil:

TD and Edado - yes sometimes one little set of muscles will over-react to something (use or a specific body position) and start twitching in a place when they haven't before. Happened to me last week - annoying but not frightening. I think it has to do with improper circulation - oxygen depletion, etc or perhaps alignment of the muscles and tendons getting a bit off during exertion.

Darr is back? :shock:
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Re: "Nervous" arms will twitch when used

Postby edado69 on June 22nd, 2011, 3:43 am

ImOK wrote:TD - I told you this would happen if you weren't absolutely clear on what is said and careful how it can cause some to see implications where they don't exist. Saying stuff like that in here is like bringing up unexplained noises under the bed, or weird shapes in the clothes closet to a kid at bedtime and then leaving them to deal with it. :evil:

TD and Edado - yes sometimes one little set of muscles will over-react to something (use or a specific body position) and start twitching in a place when they haven't before. Happened to me last week - annoying but not frightening. I think it has to do with improper circulation - oxygen depletion, etc or perhaps alignment of the muscles and tendons getting a bit off during exertion.

Darr is back? :shock:

I subscribe Darr post. As far as my twitch to the leg goes, it has stopped. Interestingly even the calves are quite at the present. Yesterday I had a particulary violent twitching non-stop to my right arm(either moving my arm or not) which has resolved after 3 hours circa (at the least for now). In other words, the pattern of the twitching is incredibly variable and given time (well more than 4 for me now), you will experience pretty much all the possible kinds you may think of. As I said, I am as strong as ever and still lifting more than most of my mates. No matter they way you look at it, for a new sufferer, this should be good news considering the initial fears anyone does experience.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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