Going NUTS

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

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Going NUTS

Postby KERRI on June 16th, 2003, 4:27 pm

I had a brief period when I actually felt like I was not dying, but I am affraid that I am going crazy again, I hear even Jenn post about reading of a man who had a thumb twitch and had ALS. Iread about a lady who had leg pain and muscle twitches, foot drop as well for a year before she went to the doctor and found she had als, there must be some way to rule out ALS, is it a muscle biospy or more EMGS whatever it is I would like to find it, I cannot stand this anymore.


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Postby Jenn311 on June 16th, 2003, 4:36 pm

Hey Kerri...

Crud! I knew I shouldn't have posted that...but it seemed essential in representing how much influence our psyches have on our body. there is a way to rule out ALS, and it's an EMG, of which I have never had one. You, my friend, have had four. That pretty much rules out ALS. So you are fine, just repeat that and make it your mantra!
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Postby reneeintx on June 16th, 2003, 5:00 pm

Kerri~

I'm like you. I'm okay most of the time and then one article about some odd ball case of ALS and the freaky me starts emerging.

I go to another health board frequently and there is an ALS forum. I know people here are thinking.. why are you going there?!? It's like the forbidden fruit.. you are so tempted you have to taste.

There's a post about this guy's dad having symptoms of ALS and it took 2 years for him to be diagnosed :( In the post he says his dad has twitches in his legs and feet and cramps also. That's exactly what I've been having. :shock:

I had to pm Jenn and Arron, after reading that post and getting cramps that night.

I was crying and my husband was trying to console me saying there could be numerous factors that played into the story. Such as neuro's that don't see ALS very often, or the man didn't pass the initial neuro exam(strength, walking) and maybe his emg had something suspicious going on. I don't think we ever get the WHOLE story when we read these posts.

You know the more we worry the more we'll twitch. We can't zero in on these odd ball cases and throw everything else out the window.

Renee :)

Listen to Jen, she's dealt with this stuff for quite some time.
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Postby KERRI on June 16th, 2003, 5:10 pm

Jenn311 wrote:Hey Kerri...

Crud! I knew I shouldn't have posted that...but it seemed essential in representing how much influence our psyches have on our body. there is a way to rule out ALS, and it's an EMG, of which I have never had one. You, my friend, have had four. That pretty much rules out ALS. So you are fine, just repeat that and make it your mantra!
~Jen


I even freak when I make a mistake typing thinking that means I am weak. I read that crap somewhere to.

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Odd ball cases

Postby KERRI on June 16th, 2003, 5:13 pm

reneeintx wrote:Kerri~

I'm like you. I'm okay most of the time and then one article about some odd ball case of ALS and the freaky me starts emerging.

I go to another health board frequently and there is an ALS forum. I know people here are thinking.. why are you going there?!? It's like the forbidden fruit.. you are so tempted you have to taste.

There's a post about this guy's dad having symptoms of ALS and it took 2 years for him to be diagnosed :( In the post he says his dad has twitches in his legs and feet and cramps also. That's exactly what I've been having. :shock:

I had to pm Jenn and Arron, after reading that post and getting cramps that night.

I was crying and my husband was trying to console me saying there could be numerous factors that played into the story. Such as neuro's that don't see ALS very often, or the man didn't pass the initial neuro exam(strength, walking) and maybe his emg had something suspicious going on. I don't think we ever get the WHOLE story when we read these posts.

You know the more we worry the more we'll twitch. We can't zero in on these odd ball cases and throw everything else out the window.

Renee :)

Listen to Jen, she's dealt with this stuff for quite some time.



Just how many odd ball cases are there out there.

I have a hard time believing this is all benign, what caused all of it, how do I know if I have weakness, for example my hands.

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Postby reneeintx on June 16th, 2003, 5:42 pm

I know where your're coming from, girl.

I have many doubts too. People just don't twitch all the time. It's not nomal..I know. I don't know what else we can do.

Maybe a muscle biopsy like you said. I asked my neuro about it and he said it was the "gold standard test" for diagnosing ALS.

The problem is would they give us one without being a suspiscious case?? The neuro I have probably wouldn't give me one, and the insurance sure wouldn't foot the bill.

Ask your neuro if he would give someone a biopsy if "they" wanted one, to help ease their mind.

Renee :)
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Postby Brian_B on June 17th, 2003, 12:43 am

Crud! I knew I shouldn't have posted that...but it seemed essential in representing how much influence our psyches have on our body. there is a way to rule out ALS, and it's an EMG


you can also rule out ALS if you dont get worse very quickly

you been twitching for 5 years right? if you had ALS you would be dead already.
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Postby dave YY on June 17th, 2003, 1:08 am

Kerri, Kerri, Kerri!

None of those are really "odd cases." Sometimes people twitch first before weakness, and usually it starts in one spot from what I've read. A two year dx process doesn't mean they had no idea for two years... It could have been related to so many different factors, such as the requirement that at least three limbs show denervation, or they might have taken more time ruling out all other possibilities, or the patient might not have come in frequently enough for a speedy official dx.

I've spent more time on the Braintalk neuromuscular board, but it looks to me like the same is true here: nobody who's come here with twitches, with a clean EMG and clinical exam, has gone on to get ALS. It's consistant with the Mayo study.

Why do people here who are scared of ALS wish for it to be rapidly progressing? The father of a friend of mine has had it for 21 years and he still gets around and talks fine and is enjoying life...
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Postby KERRI on June 17th, 2003, 6:26 am

dave YY wrote:Kerri, Kerri, Kerri!

None of those are really "odd cases." Sometimes people twitch first before weakness, and usually it starts in one spot from what I've read. A two year dx process doesn't mean they had no idea for two years... It could have been related to so many different factors, such as the requirement that at least three limbs show denervation, or they might have taken more time ruling out all other possibilities, or the patient might not have come in frequently enough for a speedy official dx.

I've spent more time on the Braintalk neuromuscular board, but it looks to me like the same is true here: nobody who's come here with twitches, with a clean EMG and clinical exam, has gone on to get ALS. It's consistant with the Mayo study.

Why do people here who are scared of ALS wish for it to be rapidly progressing? The father of a friend of mine has had it for 21 years and he still gets around and talks fine and is enjoying life...


21 YEARS!!!!!

Well that is not so bad, I guess we worry so much because it is fatal, if we new we would live for 21 more years with it we probably would not worry, but that is life isn't is we do not know what hand we will be dealt and that is the biggest fear of all. I know that people who do not get an official diagnosis for 2 years, that is because of the guidelines required for a diagnosis, the neuro explained that to me a long time ago. I just fear the people who have had negative emgs, but you guys are correct about several things, such as, my twitching originally began in my left arm, and I can still use it, and I get twitches in my thumb once and a while, but so do other people that I know.

I am trying to get through this, it is the hardest thing I have ever done.

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Postby alive on June 17th, 2003, 7:14 am

I must say I don't find this type of discussion helpful at all :( . I come to this site to get reassurance that even though I twitch and my jaws/hands/throat or something else may feel strange, I'm still not dying a horrible death in the near future.

Most of the posts on this site are an excellent reassurance. However, going over some strange cases someone has read about on the internet isn't actually what I come for here. I was doing a great job of recovering and leaving the obsession of thinking of my own death behind - I've had twiches for 3 months now and thought I was beginning to be on the safe side, since no weakness has kicked in. But what I read now is that there are people who go undiagnozed for TWO years, others who carry golfbags EVEN THOUGH they suffer from bulbar onset - which is supposed to be the quick form and yet others who know of someone who has had ALS for 21!!!! years and are still going strong.

What's going on??? I want to believe that I'm OK, but it's getting harder and harder...
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Postby Arron on June 17th, 2003, 11:05 am

OK, OK, OK... STOP with the self scare tactics everyone! There are LOTS of benign things in life that can't be explaind or that aren't "normal" compared to the rest of the population. It still doesn't mean they are "diseases" though, or things that can render you helpless or dead.

Want a few examples? Migrane headaches, Those aren't "normal". Is it normal to have headaches all of the time? No. Is it life threatening? no. Do doctors know what causes them? Not really. Can they cure them? No.

IBS - Irritable Bowel Syndrome. Is it normal to have to run to the toilet constantly no matter what you eat? NO. Is it life threatening? No. Do doctors know what causes it? No. Can it be cured? Not really.

Want other examples? Chronic Pain Syndrome, Chronic Fatigue Syndrome, Accute - Recurring Sinusitis, Generalized Anxiety Disorder, Panic Attacks, Benign tremors and many, MANY others that aren't "normal" but are certainly there. None of them have cures or actual known causes and certainly aren't life threatening, so get off this "twitching MUST be bad" because it isn't normal" kick.

Geeze - some of you have had this for a long time. You have had several visits to expert neuro's and had clean EMG's and show no signs of ANY NMD, what so ever, yet you continue to scare yourself and other's when you come on here and start saying crap like "It MUST be a disease" and "it isn't normal to twitch", No *beep* Surlock! :roll: Of course it isn't "normal" to twitch constantly! It also isn't "normal" to have the shakes, yet you go to restaurants and the waiter that is serving you food has hands that shake like leaves, or the check-out person at the super market has hands that tremor so bad, they almost drop your change. Is that "normal"? No, Is it common and not life threatening and in no way an indicator of any diseaase? Of course!

There are LOTS of things a that don't apperar to be "normal" as well, but have no reason to be scared about. So quit scaring newbies and yourselves over and over again. If you had at least one visit to a qualified neurologist and had at least one clean EMG, then you have a better chance of being killeed by bnlue ice falling out of the sky or being hit by a train (statistically) than the possibility of having ALS or any other nasty NMD, so get over it aleady! And certainly wuit ascaring other people looking for support and SOLID answers.

So far, after everyone that has posted on this web site, on the BrainTalk.org web site and even the medHelp.org web site, not one single person has contracted ALS from twitches or BFS, NOT ONE!!! That is about as solid as you can get for good, hard PROOF that you too, do not need to be continually scaring yourself and other's on this web site.


Move-on! And, if I see more posts like what's in this thread, with the "whoa's me. It must be a bad disease" It isn't normal to twitch"... blah, blah, blah garbage, I'm going to start deleting them! It doesn NO ONE any good to hear unfounded and unsupported statements like those!

I don't want to come across as a *beep* head here, but this web site is about SUPPORT for other twitchers and for sharing experiences, NOT for scaring people even more! If you had hard evidence that BFS could be a disease, then I wouldn't be saying all of this, but so far, out of tens of thousands of posts from thousands and thousands of poster's on numerous web sites that I frequent... NO ONE has ANY evidence, what so ever indicationg that BFS is life threatening, is a disease, render's you helpless or is crippling in any way, shape or form, so NO MORE scare tactics!
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Postby dave YY on June 17th, 2003, 11:07 am

alive wrote:I must say I don't find this type of discussion helpful at all :( . I come to this site to get reassurance that even though I twitch and my jaws/hands/throat or something else may feel strange, I'm still not dying a horrible death in the near future..


(if you twitch) a clean EMG and clinical neuro exam means NO ALS. Not matter WHAT you find on the internet. Time after time, I've been scared by anecdotal stories. It seems like ultimately there is always more to the story...

Someday I'll probably find on the internet a credible case of someone having twitching, negative EMG(s), and going on to get ALS later. At that time, I'll remind myself that even then, it's arbitrary info. In the course of our lives taken in total, we each have roughly a one in 850 chance of getting or dying of ALS. Out of thousands or perhaps tens of thousands of Americans alone who get this twitching every year, it is guaranteed that some are going to sooner or later get ALS independently of their BFS. It's odd that it doesn't seem to happen (more often?).

The only answers that count are those of our neuros. At braintalk I posted a National Geographic story about how eating bats might have caused the astromnomical ALS incidence on that island out in the Pacific or wherever... My point is, What the hell? Why am I trying to understand what causes that disease or whether I have it? That obviously belongs in the realm of the pros.
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Postby dave YY on June 17th, 2003, 11:25 am

Arron wrote:Move-on! And, if I see more posts like what's in this thread, with the "whoa's me. It must be a bad disease" It isn't normal to twitch"... blah, blah, blah garbage, I'm going to start deleting them! It doesn NO ONE any good to hear unfounded and unsupported statements like those!



Whoah, Arron! Real bad idea... I don't even know where to begin on that threat... These are real people with real concerns, and even if the info is wrong, it offers an opportunity for others to set the record straight. Censorship isn't the answer, and even if it were in some cases it seems you've set the bar very low. In the long run, good science prevails and bad science falls by the way. I would think the same applies here.
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Postby Rich Longer on June 17th, 2003, 11:56 am

Everybody please. this is getting way out of hand.

The enemy here is anxiety and that is going to do you a lot more harm than an uncommon neurolgical disease you don't have.

if you are searching for certainty you won't get it. .

Lets be sensible here.

ALS is uncommon. BFS is common
ALS does not usually present as twitching
You have had a proper assessment and been told you are fine - by an expert.
You may have had a negative EMG - or as in my case been told you don't need one.

What this adds up to is - you are fine. Thats the opinion of your doctor. thats medical fact. And whilts nothing is absolutely totally 100% this is the best you are going to get.

So why give so much thought to scare stories from the internet - that might not even be true. Many news stories are not reported accurately - they are written as a story not a source of medical fact. And the internet is full of nonsense, scare stories and rubbish.

I think this might be my last post for a while - I need to have a break from thinking about twitches - (although knowing me i will be back in a week.)

Take care and please keep off ALS sites. Beleive your doctor not some third rate internet news story.

All the best


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Postby reneeintx on June 17th, 2003, 1:16 pm

I'm so sorry for upsetting anyone with my post. Acutally when I read about odd cases, I very scared myself and am looking for reassurance. :cry:

Renee :(

Arron~

You are right, there are lots of medical conditions that are not normal, but people just live with them, and are okay. ex(high blood pressure, essential tremor, shingles..ect)
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