Twitching Pinky and Thumb Muscles?
- Thread starter jsageurge
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WJJW, you have to consider that doctors are people, and all people have their own opinion. Some of them are good and accurate and other's are not so good and accurate. I am not saying what Swift_TaySwift20's neuro said isn't accurate. What I am saying is it goes against what 99+% of all other neuro's say.
Is it a 5% chance? Well maybe it is and maybe it isn't. Consider this: BFS and ALS are not related in any way, shape or form. Just because they both happen to have "twitches" as one of the symptoms certainly doesn't mean they are even close to being related. Besides, as I've said before, BFS twitches and ALS twitches are different. ALS twitches are "true fasciculations" where BFS twitches are mosly not. They are random thumps, jumps, jolts and not always "true fasciculations". This is why a lot of people say nothing showed-up on their EMG, even while twitching in the limb that was getting poked. This just goes to show that it is obviously NOT the electrical nerve firing the movement in the muscle, it is probably a "chemical" action, such as hormones, something in the immune system or whatever. Either way it is obviously NOT the same mechanism that triggers them to move as ALS. Besides, if a twitch is firing becuase of ALS, that means the disease is has already killed nerves and is well on it's way to doing more destruction being that ALS "twitches" are a secondary action of the disease, not a primary. Twitches do not cause ALS... it's the other way around.
So, sharing a common symptom such as twitches (even though they are not the same), let's entertain the idea anyway and move-on to my point.... it is very much like having a headache and getting it checked out. You might even have an MRI and a CT scan and what they find might not be anything at all as a cause (much like not finding anything causing BFS, but it's certainly there). Just because they deemed that your headache at that point wasn't caused by anything, certainly doesn't mean you can't get a brain tumor 10 months or 10 years down the road. After all, both benign headaches and brain tumors have "headaches" as a common symptom. This is absolutely NO different between BFS "twitches" and ALS "twitches".
With that, just because someone's twitches at the time of their EMG are deemed to not be caused by ALS, doesn't mean they won't ever get ALS in their lifetime, and NO doctor on the planet can guarantee you that you won't get something down the road. Swift_TaySwift20 probably has a 30+% chance of getting cancer. Even if he (or she) checked-out to not have cancer at this moment... there is always a percent of chance that we will, and we ALL have that chance.
We ALL have a chance of getting ALS, whether we have BFS or not, or if we had a clean EMG or not, just like we ALL have a chance of getting struck by lightning or getting hit by a meteor, after all, there are two documented cases of people actually getting hit by meteors, so it can happen.
My point is, doctors all have opinions, be them good or not, or accurate or not. Some people say strange things. 5% of the population does NOT have ALS, nor do 5% of BFS sufferer's aquire ALS, so where he came up with the "5%" is beyond me. What I DO know is some of you need to quit taking every little thing as a "literal" statement of fact. If I said I am running down to the store and "I'll be back in a minute"... does that mean I can actually get ready, get in my car, drive 3 miles to the store, shop, wait in line to check out, load my groceries into the car, drive 3 miles back home, unload everything and have it all done in one minute? NO! WJJW, have you used this very same term before? I'd be willing to be my life's savings on it that you have. So are YOU "inaccurate" in what you say? Yes, just as much as that neuro choosing to use "5%" as a number.... it's all relevant.
"He said this"...., "My neuro said that".... yeah, well I said I can have my chores done today in "3 shakes of a lambs tail". So how long is that? We have cows and vineyards around here, not sheep! It'd take me all day to go find a sheep!, Then trying to catch it and shake it's tail????
Just becuase someone says one thing, doesn't mean you need to discect it and take it for it's literal meaning. You need to look at ALL of the facts and data and make an educated descision from there.
So far, being that I, to this day, have not heard of a single BFS'er having his or her "disease" turn-into ALS, I need to make an educated guess that the chances of that happeneing then, are quite a bit less than 5%, and it didn't take a rocket scientist to figure that out.... although I do play one on TV... or should I say, I am not a rocket scientist, but I did stay at a Holiday Inn last night
)
Is it a 5% chance? Well maybe it is and maybe it isn't. Consider this: BFS and ALS are not related in any way, shape or form. Just because they both happen to have "twitches" as one of the symptoms certainly doesn't mean they are even close to being related. Besides, as I've said before, BFS twitches and ALS twitches are different. ALS twitches are "true fasciculations" where BFS twitches are mosly not. They are random thumps, jumps, jolts and not always "true fasciculations". This is why a lot of people say nothing showed-up on their EMG, even while twitching in the limb that was getting poked. This just goes to show that it is obviously NOT the electrical nerve firing the movement in the muscle, it is probably a "chemical" action, such as hormones, something in the immune system or whatever. Either way it is obviously NOT the same mechanism that triggers them to move as ALS. Besides, if a twitch is firing becuase of ALS, that means the disease is has already killed nerves and is well on it's way to doing more destruction being that ALS "twitches" are a secondary action of the disease, not a primary. Twitches do not cause ALS... it's the other way around.
So, sharing a common symptom such as twitches (even though they are not the same), let's entertain the idea anyway and move-on to my point.... it is very much like having a headache and getting it checked out. You might even have an MRI and a CT scan and what they find might not be anything at all as a cause (much like not finding anything causing BFS, but it's certainly there). Just because they deemed that your headache at that point wasn't caused by anything, certainly doesn't mean you can't get a brain tumor 10 months or 10 years down the road. After all, both benign headaches and brain tumors have "headaches" as a common symptom. This is absolutely NO different between BFS "twitches" and ALS "twitches".
With that, just because someone's twitches at the time of their EMG are deemed to not be caused by ALS, doesn't mean they won't ever get ALS in their lifetime, and NO doctor on the planet can guarantee you that you won't get something down the road. Swift_TaySwift20 probably has a 30+% chance of getting cancer. Even if he (or she) checked-out to not have cancer at this moment... there is always a percent of chance that we will, and we ALL have that chance.
We ALL have a chance of getting ALS, whether we have BFS or not, or if we had a clean EMG or not, just like we ALL have a chance of getting struck by lightning or getting hit by a meteor, after all, there are two documented cases of people actually getting hit by meteors, so it can happen.
My point is, doctors all have opinions, be them good or not, or accurate or not. Some people say strange things. 5% of the population does NOT have ALS, nor do 5% of BFS sufferer's aquire ALS, so where he came up with the "5%" is beyond me. What I DO know is some of you need to quit taking every little thing as a "literal" statement of fact. If I said I am running down to the store and "I'll be back in a minute"... does that mean I can actually get ready, get in my car, drive 3 miles to the store, shop, wait in line to check out, load my groceries into the car, drive 3 miles back home, unload everything and have it all done in one minute? NO! WJJW, have you used this very same term before? I'd be willing to be my life's savings on it that you have. So are YOU "inaccurate" in what you say? Yes, just as much as that neuro choosing to use "5%" as a number.... it's all relevant.
"He said this"...., "My neuro said that".... yeah, well I said I can have my chores done today in "3 shakes of a lambs tail". So how long is that? We have cows and vineyards around here, not sheep! It'd take me all day to go find a sheep!, Then trying to catch it and shake it's tail????
Just becuase someone says one thing, doesn't mean you need to discect it and take it for it's literal meaning. You need to look at ALL of the facts and data and make an educated descision from there.
So far, being that I, to this day, have not heard of a single BFS'er having his or her "disease" turn-into ALS, I need to make an educated guess that the chances of that happeneing then, are quite a bit less than 5%, and it didn't take a rocket scientist to figure that out.... although I do play one on TV... or should I say, I am not a rocket scientist, but I did stay at a Holiday Inn last night
)Hi Swift_TaySwift20 – No one was under the impression that your neurologist was a quack. Everything he told you (95% presents with weakness, after 6 months of twitching weakness would have shown up, etc.) should make you feel very good about your situation. The only reason I even commented on it was because you mentioned the 5% thing in two posts, and I thought it might be concerning you. There are two ways that you could choose to interpret it:
1. Since 95% presents with weakness, someone who is twitching could (although very, very far from likely in your case) fall into the 5% category.
2. Swift_TaySwift20 who has twitched for 8 months and has had 2 clean EMGs has 5% chance of developing ***.
I seriously think that he meant number 1, and would not read anything further into it. I really hope that you don’t walk around for the next few months thinking otherwise. As Alonzo said, that would go against what 99+% of neurologists say, and it should be clear that your neurologist did not mean that. This has been discussed at great lenght on this site, and is why I refrained from commenting on your first post.
Regarding the paraneoplastic syndromes, you might also want to check out this:
It looks like these occurrences are not only rare, but usually present with more serious neurological symptoms like muscle weakness. I have not done as much ”Internet research” on this as JodiD (and do not plan on it), but it looks like that assumption does not conflict with the Hart study (there were greater incidences of muscle weakness and other serious symptoms than with cancer).
1. Since 95% presents with weakness, someone who is twitching could (although very, very far from likely in your case) fall into the 5% category.
2. Swift_TaySwift20 who has twitched for 8 months and has had 2 clean EMGs has 5% chance of developing ***.
I seriously think that he meant number 1, and would not read anything further into it. I really hope that you don’t walk around for the next few months thinking otherwise. As Alonzo said, that would go against what 99+% of neurologists say, and it should be clear that your neurologist did not mean that. This has been discussed at great lenght on this site, and is why I refrained from commenting on your first post.
Regarding the paraneoplastic syndromes, you might also want to check out this:
It looks like these occurrences are not only rare, but usually present with more serious neurological symptoms like muscle weakness. I have not done as much ”Internet research” on this as JodiD (and do not plan on it), but it looks like that assumption does not conflict with the Hart study (there were greater incidences of muscle weakness and other serious symptoms than with cancer).