Seeking Info on 6,7% Study
- Thread starter Jackie
- Start date
It was a smallish-scale study by Eisen & Stewart which found 6.7pc of *** cases began with twitching as the first symptom reported to a doctor.
However the authors of the Mayo study responded by saying in their experience such patients ALWAYS had EMG abnormalities.
Their exact response was:
"It is our experience, however, that patients who have fasciculation alone as the first symptom of ALS always have electromyographic (EMG) abnormalities when they present with fasciculation. This does provide the opportunity to stress again that the subjects in this study had both a normal complete neurological examination and normal EMG, performed by experienced observers. When these criteria are met, we believe that one can strongly reassure the patient."
However the authors of the Mayo study responded by saying in their experience such patients ALWAYS had EMG abnormalities.
Their exact response was:
"It is our experience, however, that patients who have fasciculation alone as the first symptom of ALS always have electromyographic (EMG) abnormalities when they present with fasciculation. This does provide the opportunity to stress again that the subjects in this study had both a normal complete neurological examination and normal EMG, performed by experienced observers. When these criteria are met, we believe that one can strongly reassure the patient."
Thanks D75,
I also wonder, what is slow onset? I have had symptoms for more than
a year ( twitching, bussing etc ) but still no weakness.
Could the onset ever be as slow as this....?
I haven`t really worried about ***, but I am going though a bad period at the moment, worrying about these symptoms too much..
Joanna
I also wonder, what is slow onset? I have had symptoms for more than
a year ( twitching, bussing etc ) but still no weakness.
Could the onset ever be as slow as this....?
I haven`t really worried about ***, but I am going though a bad period at the moment, worrying about these symptoms too much..
Joanna
I think after that time you are about as "in the clear" as you can be.
"Slow onset" doesn't mean no change at all after a year or two years - it means less change than in typical cases (which would mean week to week, or month to month, deterioration). *** is almost always a quick-moving disease. The signs are usually pretty obvious (as one doc said to me: we just KNOW when someone has it - but it is very hard to explain this to someone who doesn't have it).
Have you had an EMG?
"Slow onset" doesn't mean no change at all after a year or two years - it means less change than in typical cases (which would mean week to week, or month to month, deterioration). *** is almost always a quick-moving disease. The signs are usually pretty obvious (as one doc said to me: we just KNOW when someone has it - but it is very hard to explain this to someone who doesn't have it).
Have you had an EMG?
ydav3yat3s
Well-known member
No emg.
I am scheduled for an evoked potential and a spine MRI.
Maybe I should demand an EMG....but even after all this time of twitching..?
I am scheduled for an evoked potential and a spine MRI.
Maybe I should demand an EMG....but even after all this time of twitching..?
I wouldn't bother. I just had a look at some of your previous posts and it sounds like you are being very well tested!
Many, perhaps most, of us here who have had EMGs had them despite our neuros saying they were not necessary. They do not necessarily stop the worrying once you are in an anxiety state. An anxious brain will find reasons to doubt EVERYTHING.
Ultimately, it's vital to remember that what we are worried produces symptoms that would almost always set alarm bells ringing with a medical professional from the first few weeks. A neuro should be even more attuned to the signs. After a year, and so much testing, I think you should relax.
Many, perhaps most, of us here who have had EMGs had them despite our neuros saying they were not necessary. They do not necessarily stop the worrying once you are in an anxiety state. An anxious brain will find reasons to doubt EVERYTHING.
Ultimately, it's vital to remember that what we are worried produces symptoms that would almost always set alarm bells ringing with a medical professional from the first few weeks. A neuro should be even more attuned to the signs. After a year, and so much testing, I think you should relax.
ydav3yat3s
Well-known member
Thank you for beeing so nice and replying to my post..
I worry more about paraneoplastics conditions etc than ALS, but all of a sudden the A word enters my mind and I start searching....bad idea !!
I just hate beeing undiagnosed...its awfull.
I worry more about paraneoplastics conditions etc than ALS, but all of a sudden the A word enters my mind and I start searching....bad idea !!
I just hate beeing undiagnosed...its awfull.
Don't search. You'll only get anecdotes and stories and medical papers that are either difficult to understand or out-of-context.
The best place to get considered, objective, "in context" facts is from your neurologist, or a website like this that distills information from neurologists.
I'm still having problems (nerve pain, perceived weakness) in my right arm 14 months after my (bodywide) twitching began. It is not getting better but not getting worse. I still consider this arm issue "undiagnosed" despite being told my twitches are BFS.
Not having a definite explanation is worrying. But there must come a time when you think to yourself: yes, there is something wrong, and no, no one has told me _exactly_ what it is, but whatever it is isn't going to kill me.
The best place to get considered, objective, "in context" facts is from your neurologist, or a website like this that distills information from neurologists.
I'm still having problems (nerve pain, perceived weakness) in my right arm 14 months after my (bodywide) twitching began. It is not getting better but not getting worse. I still consider this arm issue "undiagnosed" despite being told my twitches are BFS.
Not having a definite explanation is worrying. But there must come a time when you think to yourself: yes, there is something wrong, and no, no one has told me _exactly_ what it is, but whatever it is isn't going to kill me.