ptich: yes, they were present during EMG and I request to test exactly that muscle. Im not alone with this, a lot of people with BFS have constant twitching in calves even during EMG, which found nothing except fasciculations - and so its normal, without denervaton potentials.
Sound like ALS?
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CindyM
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They stuck the needle right into a muscle in my hand that is almost completely wasted (gone) and twitches constantly. It showed renervation, not denervation, so after all this time I am confident it is not ALS. Glad I took the "wait and see" attitude.
rose
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Harvey,
The short answer is what you've already received multiple times, its that no, what you're experiencing does not indicate the start of ALS bulbar or otherwise.
Additionally, I've read in several scholarly articles that bulbar ALS manifestations, almost without fail, present with speech difficulties before swallowing. In fact, its one of the avenues a practitioner takes to try to sort out what may be going on when they first see a patient, the question of whether the patient perceives swallowing trouble, versus how they sound when they're talking to that doctor. I don't have the actual article (s) handy to put here, but if I can find them on the internet, anyone can, because I'm not all that much of an internet researcher) ...
I copy and pasted some of the important parts of the link I'd supplied earlier in case the link didn't work for you....
If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.
It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.
Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology
I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.
For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.
For most, it is a gradual perception, rather than a sudden revelation.
Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.
Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial
[Quote from BethU below]
I wonder if some people with BFS symptoms think that when we mention anxiety or say the word "benign," what we're really saying is, "It's all in your head ... your symptoms aren't "real"?
That is SO not true!
From what little I know from reading posts here, the symptoms of BFS are actually worse and much more alarming than the early stages of ALS.
What "benign" means is simply that these symptoms are not going to kill you. Just as you can develop tumors that are not cancer, but they're real tumors, and need to be dealt with! I can't picture anyone saying to an oncologist who has just told you your tumor was benign, "I don't believe you. I'm SURE I've got cancer. I'm going to talk to other cancer patients and see if they agree with me, because if it's not cancer, what is it?" (The answer is: a benign tumor. Stuff happens to the body.)
So ... Benign Fasciculation Syndrome is a "real" disease, and recognized as such by the medical profession. BFS has wide-ranging symptoms that are probably much more debilitating than the early stages of ALS.
If a neurologist tells you you don't have ALS, he/she is not saying that your symptoms are imaginary, or that your symptoms are not "serious," just that your symptoms are not ALS, they are something else. If you want the symptoms to stop, you need to stop fixating on what it's NOT, and help your neuro figure out what it is.
If (the above) and previous replies don't settle your fears, please use the search function, on this forum. There is a wealth of information to be found here.
Good luck to you.
The short answer is what you've already received multiple times, its that no, what you're experiencing does not indicate the start of ALS bulbar or otherwise.
Additionally, I've read in several scholarly articles that bulbar ALS manifestations, almost without fail, present with speech difficulties before swallowing. In fact, its one of the avenues a practitioner takes to try to sort out what may be going on when they first see a patient, the question of whether the patient perceives swallowing trouble, versus how they sound when they're talking to that doctor. I don't have the actual article (s) handy to put here, but if I can find them on the internet, anyone can, because I'm not all that much of an internet researcher) ...
I copy and pasted some of the important parts of the link I'd supplied earlier in case the link didn't work for you....
If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.
It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.
Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology
I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.
For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.
For most, it is a gradual perception, rather than a sudden revelation.
Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.
Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial
[Quote from BethU below]
I wonder if some people with BFS symptoms think that when we mention anxiety or say the word "benign," what we're really saying is, "It's all in your head ... your symptoms aren't "real"?
That is SO not true!
From what little I know from reading posts here, the symptoms of BFS are actually worse and much more alarming than the early stages of ALS.
What "benign" means is simply that these symptoms are not going to kill you. Just as you can develop tumors that are not cancer, but they're real tumors, and need to be dealt with! I can't picture anyone saying to an oncologist who has just told you your tumor was benign, "I don't believe you. I'm SURE I've got cancer. I'm going to talk to other cancer patients and see if they agree with me, because if it's not cancer, what is it?" (The answer is: a benign tumor. Stuff happens to the body.)
So ... Benign Fasciculation Syndrome is a "real" disease, and recognized as such by the medical profession. BFS has wide-ranging symptoms that are probably much more debilitating than the early stages of ALS.
If a neurologist tells you you don't have ALS, he/she is not saying that your symptoms are imaginary, or that your symptoms are not "serious," just that your symptoms are not ALS, they are something else. If you want the symptoms to stop, you need to stop fixating on what it's NOT, and help your neuro figure out what it is.
If (the above) and previous replies don't settle your fears, please use the search function, on this forum. There is a wealth of information to be found here.
Good luck to you.
Harvey Boy
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well i noticed a year ago that i was kinda slurring my speech. hasn't gotten worse though.
and like I said, even simple tasks like doing the dishes, holding the phone - they burn my shoulders and biceps, they feel weak. that scares me...
but thanks for the reply. good information there.
and like I said, even simple tasks like doing the dishes, holding the phone - they burn my shoulders and biceps, they feel weak. that scares me...
but thanks for the reply. good information there.
Harvey Boy
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also my tongue looks different. teethy, ripply on sides and definitely less meaty on the left side. That to me is the "oh, this could really be ALS afterall" sign. Tongues don't atrophy from a pinched nerve, or stress, or anxiety (if only that were true!).
the tongue PLUS the hard swallowing?
scary.
the tongue PLUS the hard swallowing?
scary.
wright
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What the hell is wrong with you? This is getting ridiculous. You have been told over and over and over again, that your symptoms do not point to ALS.
If you truly had tongue atrophy (and it was due to ALS), you would be slurring all of your words and it would be very noticeable. If you had any other type of muscle atrophy (and it was due to ALS), you would be profoundly weak. I'd repeat other things that I have said to you and others, but I'd rather not waste the keystrokes. Go back and read the replies you have gotten . . . but this time . . . COMPREHEND AND LISTEN TO WHAT THEY ARE SAYING.
You have something happening to you but it doesn't sound ominous to me. Can anyone on here tell you with 100% certainty you don't have ALS? No we can't but again, nothing you have stated points to it. Let your docs get to the bottom of it. In the meantime, go to your GP or to a psychiatrist and get some anti-anxiety meds and then get the hell off of the internet. You are stating so many things that are just plain wrong, so you are obviously not qualified to interpret signs, symptoms, disease states, etc.
I'm saying all of this for your own good . . . believe me!
If you truly had tongue atrophy (and it was due to ALS), you would be slurring all of your words and it would be very noticeable. If you had any other type of muscle atrophy (and it was due to ALS), you would be profoundly weak. I'd repeat other things that I have said to you and others, but I'd rather not waste the keystrokes. Go back and read the replies you have gotten . . . but this time . . . COMPREHEND AND LISTEN TO WHAT THEY ARE SAYING.
You have something happening to you but it doesn't sound ominous to me. Can anyone on here tell you with 100% certainty you don't have ALS? No we can't but again, nothing you have stated points to it. Let your docs get to the bottom of it. In the meantime, go to your GP or to a psychiatrist and get some anti-anxiety meds and then get the hell off of the internet. You are stating so many things that are just plain wrong, so you are obviously not qualified to interpret signs, symptoms, disease states, etc.
I'm saying all of this for your own good . . . believe me!
planningguy
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Rose - We really need to get your straightforward walkthrough of El Escorial stickied somewhere/somehow. I find myself referring people to it time and time again. It makes a nice touchstone for early, "Do I have ALS?" threads.
Robert
Robert
Harvey Boy
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I know, you're definitely right. The internet is can be a very, very deadly thing when one truly believes that they have a terrible disease.
I just thought that the signs were subtle at first. Like, doing the dishes, or holding the phone, the weakness. And plus all the twitching.
But you're right, I have to wait for a qualified doc (ultimately the neuro) to really have a thorough look at me. A Dr. Christie, in Ottawa, is the one. Hopefully she's extra attentive and responsive. I don't doubt she will be.
All of this just happened so fast, I think it just took my by storm. I actually tried to ignore these symptoms for 4 months before even looking for a forum related to Neuro related diseases... so maybe that's why I'm just constantly pouring out every thought that comes to my head related to it.
anyway... thanks a lot. I understand your frustration. You can't really help, you can just suggest I don't have it - you say all signs point to something not very ominous. Coming from you, and the others, I take that with some relief. If you guys really don't think this sounds like ALS, it's definitely a bit comforting. BUT those subtle signs like even my shoulders right now, they feel strained and weak. Why? anyway... thanks a bunch, guys! I do appreciate the responses.
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