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wader1970

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Learn about ALS
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CA
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Ontario
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Hamilton
I appreciate the time you spend answering questions on this forum. Since November I have been experiencing wide spread twitching that started seemingly innocently in my eye and progressed everywhere.

After reading many of the posts, I took the advice of many and went to a Nuero last week. He said my exam was excellent and said he did not suspect ALS or MS. I asked about an EMG to be safe and he suggested t was not needed but it could be done if I wanted.

For peace of mind I asked to proceed and they did the tests - focusing mainly on my left side and right calf. The test was also fine and nothing was noted. They suggested benign fasiculations and nothing to worry about.

My worry is this- does BFS progress to ALS? I found a few studies that suggest it does and that you arent really out of the danger zone for 3-5 years with these fasiculations. Does anyone have any information to share or thoughts about this? Are there any stats supporting BFS doesnt increase the chance of progressing to ALS?

I appreciate your time and look forward to any information you might have.
 
Go to aboutBFS.com, and ask there
 
I'm not sure what studies you're quoting but you misinterpreted them. BFS is a completely different condition than ALS and will absolutely not "morph" into ALS. BFS does not turn into ALS. End of story. Relax and go enjoy your life.
 
I'm not sure what studies you're quoting but you misinterpreted them. BFS is a completely different condition than ALS and will absolutely not "morph" into ALS. BFS does not turn into ALS. End of story. Relax and go enjoy your life.

I suppose it is possible but after I read it again, I think I have understood it correctly?

Fasciculations and cramps: how benign? Report of four cases progressing to ALS

I am open to thoughts as I am new to this and really freaked out by it. I thought I would get some relief after the neuro but it looks like I still have to be concerned?
 
The article scared the heck out of me- any thoughts?
 
Go to aboutbfs.com, and ask them there. Sure, it is possible for someone with BFS to at some point come down with ALS just as it is possible for anyone to get it. Join that forum, and ask them.
 
Hello

A one paragraph abstract is not enough to make any inferences from. There is a far distance between benign fascis and ALS.

That article discusses cramps ad fascis--not just fascis--and talks about a first neuro consult. No one can be diagnosed in ONE consult with ALS.

Those with progressing symptoms are followed normally. ALS fascis don't start in the eyes. The eyes are not affected in ALS--when/if the eyes are affected at all it's very late in the process in ALS. (Some have issues with blinking late in the disease as I understand it.) The eyes are the only way those with late stage ALS can communicate via programs or letter boards.

Fascis can have many causes--the majority of them are benign. Stop worrying. If your blood levels of things like b-12 and potassium are okay then just learn to live with BFS. Good luck.
 
Yes please dont worry. I wasted a few years worrying. I do have a neurological problem but whatever it is the worrying was a waste of time
I lost those years please dont do that . accept what you have , live with it and only go back if something major changes
wosh you luck
 
Hello

A one paragraph abstract is not enough to make any inferences from. There is a far distance between benign fascis and ALS.

That article discusses cramps ad fascis--not just fascis--and talks about a first neuro consult. No one can be diagnosed in ONE consult with ALS.

Those with progressing symptoms are followed normally. ALS fascis don't start in the eyes. The eyes are not affected in ALS--when/if the eyes are affected at all it's very late in the process in ALS. (Some have issues with blinking late in the disease as I understand it.) The eyes are the only way those with late stage ALS can communicate via programs or letter boards.

Fascis can have many causes--the majority of them are benign. Stop worrying. If your blood levels of things like b-12 and potassium are okay then just learn to live with BFS. Good luck.



I appreciate the response and I am trying to move past his but it causes me to worry. If you google the details it is longer than 1 paragraph but I was unable to get that to post cprrectly.
 
Yes please dont worry. I wasted a few years worrying. I do have a neurological problem but whatever it is the worrying was a waste of time
I lost those years please dont do that . accept what you have , live with it and only go back if something major changes
wosh you luck

That is great advice! I am trying to move forward but the twitching keeps reminding me of the possibilities. I do appreciate the way you frame it..........thanks.
 
That paper was worded poorly, but it was written to make an important point. Just because someone has had a benign condition in the past does not mean whatever they are complaining about now is benign. It was written by doctors and for doctors, because ignoring the complaints of patients who had previously had BFS was very common. Unfortunately, just like every other group, about 1 in every 50,000 BFSers will get ALS. The people who wrote it had no idea how many anxious BFSers would read it and interpret it as meaning their condition could morph into ALS at any time.

It's unsettled many, many people at this point. None of the have asked me about it have gotten ALS. So follow up with your docs when appropriate, but don't let it worry you.
 
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