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suzannj

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Hi Everybody,
My former thread was "Terrified Mommy of 1 Yr. Old".....still applies but I have new questions so thought I would start a new string.

After reading (and reading, and reading!) I'm getting confused. (As an aside to other folks who have answered my questions, thank you SO MUCH. I am now scheduled to see a neuro but cannot get in for another month which feel like forever) What I know at the very least is ALS wears many disguises, and maybe that's why I read something and feel positive, and then read something else and feel completely frantic.

1) I've read that the "pop-pop-pop" fasciculations all over the body are a "good" sign that points away from ALS because ALS related muscle twitching is more of a wave or "bag of worms" undulating up and down one particular muscle. And yet I've read some information that ALS twitches started as just that - the 'pop-pop-pop" kind. So should I feel comforted that I'm a "popper" and not an "undulator" or no?

2) I've also read that having fasciculations everywhere is a sign that points away from ALS because, 'you're whole nervous system just doesn't go haywire all at once", and posts that have said ALS associated fasciculations are primarily in the muscle currently being negatively effected. But to the contrary, have also read a few posts that say their diagnosed ALS did/does have muscle twitches all over, not just designated in say a calf muscle. So which is it?

3) I also read that, "ALS is not painful". Should I then feel good so-to-speak that my leg and now the arch of my right foot is so sore from cramping all night long? Or is it not a true statement that ALS is not painful?

4) And one final notation / question: Steven Hawking is a diagnosed PAL.....and has been for FORTY YEARS. I've Googled him multiple times, but no article seems to address why or better yet HOW he has survived (and according to his own statements lived quite happily) with ALS for so, so long. He surely must be the longest documented survivor with ALS. I wonder if anyone knows if he's been (or being) studied from a medical perspective. Maybe somehow he holds a key to living long with ALS? Just a thought . . . :-?
 

olly

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hi

1)als symptoms can effect people differently as to how they percieve them.
any twitch,pop or wriggling can be faciculations.
2)from what others have said and my own experience they are localised.
all over the body at once would be more indicated to bfs.
3)any pain would be due to cramps or spasms from umn involvement.
4) i have read stephen hawkins biography and seen a documentary about him.
he was diognosed around 20yrs of age. this would be classed as juvinile onset als that has a very slow progression and can live alot longer than the typical pals who's average age is 50yrs.
there is no definate test for als,just exclusion of all other deseases,and the presence of umn+lmn signs.
i hope this helps and someone else can comment.
take good care.
caroline:)
 

Jennifer51

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Jul 7, 2008
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441
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PALS
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03/2008
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England
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London
Hi Everybody,
My former thread was "Terrified Mommy of 1 Yr. Old".....still applies but I have new questions so thought I would start a new string.

After reading (and reading, and reading!) I'm getting confused. (As an aside to other folks who have answered my questions, thank you SO MUCH. I am now scheduled to see a neuro but cannot get in for another month which feel like forever) What I know at the very least is ALS wears many disguises, and maybe that's why I read something and feel positive, and then read something else and feel completely frantic.

1) I've read that the "pop-pop-pop" fasciculations all over the body are a "good" sign that points away from ALS because ALS related muscle twitching is more of a wave or "bag of worms" undulating up and down one particular muscle. And yet I've read some information that ALS twitches started as just that - the 'pop-pop-pop" kind. So should I feel comforted that I'm a "popper" and not an "undulator" or no?

2) I've also read that having fasciculations everywhere is a sign that points away from ALS because, 'you're whole nervous system just doesn't go haywire all at once", and posts that have said ALS associated fasciculations are primarily in the muscle currently being negatively effected. But to the contrary, have also read a few posts that say their diagnosed ALS did/does have muscle twitches all over, not just designated in say a calf muscle. So which is it?

3) I also read that, "ALS is not painful". Should I then feel good so-to-speak that my leg and now the arch of my right foot is so sore from cramping all night long? Or is it not a true statement that ALS is not painful?

4) And one final notation / question: Steven Hawking is a diagnosed PAL.....and has been for FORTY YEARS. I've Googled him multiple times, but no article seems to address why or better yet HOW he has survived (and according to his own statements lived quite happily) with ALS for so, so long. He surely must be the longest documented survivor with ALS. I wonder if anyone knows if he's been (or being) studied from a medical perspective. Maybe somehow he holds a key to living long with ALS? Just a thought . . . :-?

I too have been very confused, I have popping twitches all over my body all the time, I have a lot of pain, not just from cramp and would love to think it is anything other than als... However every time I see a neuro, and keep on about what I think are different symptoms to als, they say, sorry you have bulbar onset als..I think mostly because of the results of the nerve conductive and emg....but I am NOT giving up on proving them wrong. I too have looked up a lot about stephen hawking, he lives not too far from me...about an hour...and could not find what his diagnosis was...I just assumed it must have been PLS..but I could be wrong. As everyone on this forum says, this disease is so stupid and diverse, that the only way you can be sure (?) of what you have is when the doctors have done all the tests...so hold on to hope, it might be something else..we all want that. Jennifer51
 

awieleba

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how long have you been popping?

I started with one in my hand. Then they went to all over single or two popping~everywhere!
that went on for about 3 months. They have calmed down alot BUT are mainly in my ankle, side of calve, butt, and shoulder blade. I felt better when they were all over and I more concerned that they are now resting in 3-4 area's.

I also noticed that sometimes I dont know or feel them, at night when my legs are against each other I will feel them fire off against each other, maybe I would not of felt them otherwise. I have never felt a worm or crawling feeling. I really try to look and see if I can see anything moving but have not.

I am sure also, I felt better when the twitching dailed down at first, but I got nervous again that I still have them in give or take the same area! No cramping yet.

For those in the know: do you always get cramps with als/pls eventually after the twitching or before the twitching?

thanks

april
 

Al

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I got the cramps then weakness then twitching and then atrophy. Took a good couple of years to get to atrophy.

AL.
 

Jamiet

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Suzan,

How are you, sorry your going thru this.

Answers from my opinion:

1) Varies, can be one pop to several. You cannot determine ALS twitches vs. benign, only difference is, ALS twitches don't stop, they go until the muscle is dead.

2) All over twitches vs. focal....nothing is concrete, therefore, you can't tell.

3) Some PALS have pain, some don't, but yes, muscle pain is experienced by most.

4) Stephen Hawking is the exception.

hang in there, try to relax. I was supposed to die two years ago and i don't even officially have ALS right now.

Good thing is..... i'm still alive. That...is .. hope.

Rgds,

Jamie
 

vmd

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Al:

I remember reading that you first noticed fasciculations in your calfs and they were localized. If I am reading your sequence correctly, you already had weakness in your legs by the time you noticed the fascics, then? Was your original weakness first confined to the leg that was fasciculating before it moved to the other leg? Thanks.
 

Al

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No not really. I just noticed a real weak feeling when climbibg stairs. Didn't have the strength to pick up a ladder I had always been able to pick up. I thought at the time that it was from my by-pass and don't really know if it was that or ALS starting. Not sure if the weakness was in one leg or both. Just knew I'd be tired as heck and have to rest after a few flights of stairs.
AL.
 

awieleba

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Has anyone with fasic's seen the you tube fasic's? I checked it out and it was constant in the leg.

Al:
did your's look like that? ( check out you tube als/fasic) I can sometimes see them, but not often as I am not staring at my leg 24/7.

AL, thanks for being such a wonderful person that is open to sharing. You are helping so many people!

april
 

Al

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I looked over there and yup that's about what mine looked like.

AL.
 
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lovelily

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Hello....I am not diagnosed, but have one abnormal biopsy of denervation of the quadricepts that now has atrophy. I had weakness first, then fasciculation. Mostly like a rise and a fall of the muscle. sometimes the muscle moves back and forth very quickly, above that knee. It took 2 years for the atrophy to come.

I have denervation of the opposing leg picked, up by 'EMG' I have a dent above that knee cap and there is some swelling above that. Both my calves have atrohy, but don't look like they have shrunk so much, as it looks like I have lost a lot of weight and the skin is hanging when the muscle is relaxed.

I do get that pop pop pop behind my shoulder blade, but it is not constant. The one that 'is' constant is in my left hand. My palm holds formation, is always cramped...like the other muscles involved.

take care
lovelily
 
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