ALSFORUMS.COM   - ALS/MND Support Group   - Fibromyalgia Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   -  
Old 10-24-2009, 01:12 AM   #1 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: London
State: London
Country: UK
Diagnosed: 00/0000
Posts: 12
Skyhawk is on a distinguished road
Default ALS Fasciculations

Is it true that ALS fasciculations only happen when the muscle is at rest and that these are very different in character to the standard muscle twitch?

I had a follow up with my Neuro yesterday and I was telling him the muscle twitches in my calf, biceps etc. have eased off but still happen quite often but the twitch in my little toe which twitched almost constantly has spread to a couple of toes next to it now and got worse. Yesterday my toes cramped pretty bad and also felt painful. Also when I spread out my toes and try and stretch them out then my little toe really goes for it and the muscles from the side of my little toe to the top upper side of my foot just fasciculate constantly.

He said "Well of course they will do if you stretch the muscle like your doing! and ALS is motor based not sensory, pain is not usually associated with it" He then said "You have no muscle wastage at all and even though you say your right leg and bicep feel weak, in all my tests I have performed on you they appear symmetrical in shape and I can detect no weakness at all, actually your a strong chap and your reflexes are also good, no Hoffmans, Babinski. Trust me you do not have ALS." He concluded by saying "Andy trust me I know an ALS twitch when I see one, I was just at the hospital this morning seeing an ALS patient. What most people don't realize is that ALS fasciculations 99.9% of time ONLY occur after there is evidence of atrophy - They can also easily be triggered most of the time by the examining Doctor by just flicking the skin with their finger and I cant trigger any on you. Finally they move up and down the muscle, normally the bigger ones like thigh, calfs etc quite distinctly, almost in a wave like motion that travels the entire muscle, kind of like if a worm was crawling just under your skin and all your symptoms have appeared in 3 weeks, way too fast in my opinion for ALS"

I was kind of satisfied with his answer but then I read where a few people who had ALS said they had intermittent fasciculations early on at rest and when they stretched the muscle and they just looked like normal twitches. Also that they got symptoms very quickly?

Cheers

Andy

Skyhawk is offline  
Old 10-24-2009, 04:50 AM   #2 (permalink)
Extremely Helpful Member
Registered Member
 
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Posts: 2,766
olly is on a distinguished road
Default Re: ALS Fasciculations

hi andy.
oh dear "the" twitching question again
firstly everyone is different and the replys you get may conflict leaving you more confused.
i am not a neuro so can not give you an accurate answer,only my experience.

i get twitching in my feet(has calmed down a bit,atrophy in left foot/ankle)
my upper arms shoulders(arms very thin,atrophy in shoulders.again calmed down since atrophy)
calfs(left leg a little thinner/loss of contraction in that one)
left hand that started this year,palm has sunk in.

i am led to believe bfs twitching is more wide spread and the twitches stronger.
my experience are specific problem areas with other symptoms.
they are very fine and i feel only a slight tickling feeling,sometimes i can not feel them but see them.
i dont know what goes on when i am active as i only see or feel them at rest.
they happen when my muscle is relaxed not tensed.
my neuro taps the area to get a twitch,if i tap or lightly slap my calf it will twitch.
i do suffer bad cramping in my feet,epecially the one with atrophy.

i must stress i have pls not als,after 10yrs some slight atrophy can be expected as in my case.
your tests,exam ect was good,that is brilliant
olly is offline  
Old 10-24-2009, 11:36 AM   #3 (permalink)
Senior Member
Registered Member
 
halfin's Avatar
Join Date: 2009
City: Santa Barbara
State: CA
Country: US
Diagnosed: 08/2009
Posts: 550
halfin is on a distinguished road
Default Re: ALS Fasciculations

Hi Andy, I am curious, how fast would you say your twitches come, when you get them?
halfin is offline  
Old 10-24-2009, 02:30 PM   #4 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: xxxxxxxx
State: New Brunswick
Country: CA
Diagnosed: 00/0000
Posts: 91
rhythman is on a distinguished road
Default Re: ALS Fasciculations

Sometimes, I think that I read and analyze too much.

I read Andy's opening post and thought "Now I can find out once and for all if I have als with a simple test...flicking my calves with my fingers." Of course, I spent the next 5 min sitting with my calves relaxed, and watching the twitches to see how frequent they are and if they travel the length of my calf muscle. After that, I spent 10 min. flicking and slapping my calves to see if I could incite twitches. Of course I did get a twitch or 2 or 3 soon after doing that, but not always at the exact place I struck. I don't know what to think...sigh. Here's what I do know:

1. I can see every twitch as well as feel it.

2. They occur in areas all around my calves. I don't think they travel like worms under my skin (whatever that's supposed to look like) and if they do, it's not very far.

Has anyone ever been able to causes twitches by touching, slapping or flicking and have it NOT be als?

Man, I have to stop thinking so much.
rhythman is offline  
Old 10-24-2009, 04:17 PM   #5 (permalink)
Extremely Helpful Member
Registered Member
 
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Posts: 2,766
olly is on a distinguished road
Default Re: ALS Fasciculations

sorry rhythman your post had me in stiches.
i was imagining you beating the hell out of your calfs,of course eventually they may twitch...........would'nt you flinch if someone was slapping you

seriously now,its been said hundreds of times before on the forum..............twitching does not mean zilch without obvious clinical weakness and/or atrophy.
those with als dont pay any attention to the twitching,its the other symptoms they worry about.
to a neuro twitching is not a major symptom only a tiny one to add to many other more serious signs and symptoms.
relax
olly is offline  
Old 10-24-2009, 04:33 PM   #6 (permalink)
Extremely Helpful Member
Registered Member
 
BarryG's Avatar
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Posts: 2,999
BarryG is on a distinguished road
Default Re: ALS Fasciculations

"Man, I have to stop thinking so much."

You said it buddy!
BarryG is offline  
Old 10-24-2009, 04:35 PM   #7 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: xxxxxxxx
State: New Brunswick
Country: CA
Diagnosed: 00/0000
Posts: 91
rhythman is on a distinguished road
Default Re: ALS Fasciculations

Quote:
Originally Posted by olly View Post
sorry rhythman your post had me in stiches.
i was imagining you beating the hell out of your calfs,of course eventually they may twitch...........would'nt you flinch if someone was slapping you

seriously now,its been said hundreds of times before on the forum..............twitching does not mean zilch without obvious clinical weakness and/or atrophy.
those with als dont pay any attention to the twitching,its the other symptoms they worry about.
to a neuro twitching is not a major symptom only a tiny one to add to many other more serious signs and symptoms.
relax
I've always been told that I'm a funny guy. Glad that I left you in stitches.

I did kind of beat the hell out of my calves...they're all red now. That is funny.

Thanks for your reassurance. I'm not as well read as many of you here, so I really appreciate it.

The internet is a double edged sword (actually my use of the internet is the problem). Four weeks ago, it led me to 'bulbar onset als' when I simply Googled 'excess saliva' and 'speaking issues', and that's all I've thought about since. The internet also has enabled wonderful people on this forum from the U.S., Canada, the U.K. and other places to be able to discuss and share.

I think I have to learn to enjoy every minute of every day regardless of worry and circumstance. That is something I've always admired in some of my friends and relatives and I've read posts by people on these boards who are able to do this as well. There are so many strong and caring people here...it's amazing. as I said the other day in my first post, they are true heros in my mind.
rhythman is offline  
Old 10-24-2009, 04:39 PM   #8 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: xxxxxxxx
State: New Brunswick
Country: CA
Diagnosed: 00/0000
Posts: 91
rhythman is on a distinguished road
Default Re: ALS Fasciculations

Quote:
Originally Posted by BarryG View Post
"Man, I have to stop thinking so much."

You said it buddy!
Thanks.
rhythman is offline  
Old 10-24-2009, 09:57 PM   #9 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: London
State: London
Country: UK
Diagnosed: 00/0000
Posts: 12
Skyhawk is on a distinguished road
Default Re: ALS Fasciculations

Halfin,

How fast they they come when I get them? Not quite sure what you mean but they are constant all over, when I say constant I say frequent. Mainly where I feel weakness in my right calf, foot and thigh. However I will be laying down and I will feel a twitch in my bicep or my back. But my main concern is my right foot - My little toe twitched almost constantly but now its 3 or 4 of them. I can see my Neuro corroborates what Olly has said as he does not seem concerned about the twitches at all - He said if I had hyper reflexes, Hoffmans or Babinski responses then he would be much more concerned but to date none of them are present in me. He says my weakness in my right leg may well be real but it sounds more of a trapped nerve sensation issue where as ALS is motor not sensory and atrophy normally occurs which triggers the weakness!

Rhythman,

I agree maybe you and I are analyzing everything far too much and the internet does not help. I am at the point where I am aware of every muscle twitch, movement sensation over my entire body which I know is not healthy at all. I also feel like when I come on here and say what I say I feel like I am insulting those who have been diagnosed with ALS and this is something I am not trying to do. I just feel so stuck in this phase and I cant kick myself out of it.

For example this morning sitting on the toilet I raised my right leg up and tensed it and because my thigh muscle kind of shuddered and rippled a little when I held the leg up high and shuddered a little when I let it down again I convinced myself this is ALS.

I think what is a very damaging side effect of all this worry is my family are suffering. I am deeply depressed and feel I so down inside I have this illness and people just cant see it yet because maybe it's too early (a possibility.) I just lay on my sofa all day not talking to anyone, interacting with my children and I sleep for 19 hours out of every day because I just don't want to do anything anymore because I think what's the point? I would say for the past 2 weeks I have only got off my sofa to go out and see the Neuro and that's it! My wife tells me if I just lay like that on the sofa doing nothing for 24 hours a day I will naturally have some atrophy as my muscles are doing nothing at all, it's like I have made myself bedridden - This will then make me even worse. I think she has a very valid point

Sorry I am waffling again...

Hope you are all having a good weekend

Andy
x
Skyhawk is offline  
Old 10-25-2009, 05:12 AM   #10 (permalink)
Extremely Helpful Member
Registered Member
 
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Posts: 2,766
olly is on a distinguished road
Default Re: ALS Fasciculations

hey andy.
your wife is very tolerant,if it was me i would kick your butt of the sofa

i am so sorry you are so depressed even though your tests and neuro exam are ok and you have the all clear for als....................seriously,what are you depressed about
there are people here with als,everyday losing a small peice of independance yet they dont feel sorry for themselves but just get on with things.

look at glenbrittle,he has such a great sense of humour and always joking. he brightens my day when i read his posts.
but then read his blog,behind the scenes he has many daily challenges.
this is the same for so many like bethu,rose,barry and hoping for cure ect who despite what there going through give us so much joy.

sorry to be blunt.......but get a grip of yourself,get some antidepressants if need be.
i dont mean to sound harsh,i just think you need a bit of a push to get you out of the dark place your in.
please for the sake of your wife and kids.....get out and live
olly is offline  
Old 10-25-2009, 08:06 AM   #11 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2009
City: London
State: London
Country: UK
Diagnosed: 00/0000
Posts: 12
Skyhawk is on a distinguished road
Default Re: ALS Fasciculations

Hi Caroline,

Nice to hear from you again

I think I do need to get some kind of medication to sort my head out! After reading your post I decided to get up and move my butt off to the gym.

What I found odd is while I ran I got shivers in my head and lots of goosebumps raised on my arms. Guess what I did...? Yes when I got home I googled and found goosebumps and chills whilst exercising can be Neurological oh dear sent me on a big downer again

Oh well at least i got off my backside for once in 2-3 weeks
Skyhawk is offline  
Old 10-25-2009, 09:26 AM   #12 (permalink)
Member
Registered Member
Join Date: 2009
City: someplace
State: New England
Country: USA
Diagnosed: 00/0000
Posts: 274
Moonmark is on a distinguished road
Default Re: ALS Fasciculations

Andy, if you are sleeping 19 hours a day, sitting on the couch, and doing nothing other than going to doctor's appointments, then I would bet that you are dealing with a clinical depression, which can cause many physical symptoms. Also, are you unemployed? were you laid off or something-- that can definitely lead to problems with depression and anxiety.

I, too, have had an 8-month or more history of muscle weakness, twitching, fatigue, etc, etc, and two neuros say unlikely to be ALS at this time, but are not completely ruling out a neuro disorder, either. still, I am out every day with my daughter and working from home and doing all the things one needs to do as an adult. the people on this forum who have been diagnosed are dealing with so much more, yet, as Olly says, they are still trying to live their lives to the fullest, despite enormous challenges. and they are kind enough to take the time to respond with advice and suggestions to all the people in undiagnosed-land.

say the worst case scenario happens: you have ALS or some similar disease and you eventually lose the ability to move, etc. I think you would seriously regret these months spent wasted on the couch.

I'm with Olly on this one: go see a counselor and MD who can prescribe antidepressants. They can make a world of difference.

Sandra
Moonmark is offline  
Old 10-25-2009, 09:43 AM   #13 (permalink)
Very Helpful Member
Registered Member
 
GlenBrittle's Avatar
Join Date: 2008
City: Alexandria
State: Ontario
Country: CA
Diagnosed: 10/2008
Posts: 1,541
Blog Entries: 18
GlenBrittle is on a distinguished road
Send a message via MSN to GlenBrittle
Default Re: ALS Fasciculations

Quote:
Originally Posted by olly View Post
hey andy.
your wife is very tolerant,if it was me i would kick your butt of the sofa

i am so sorry you are so depressed even though your tests and neuro exam are ok and you have the all clear for als....................seriously,what are you depressed about
there are people here with als,everyday losing a small peice of independance yet they dont feel sorry for themselves but just get on with things.

look at glenbrittle,he has such a great sense of humour and always joking. he brightens my day when i read his posts.
but then read his blog,behind the scenes he has many daily challenges.
this is the same for so many like bethu,rose,barry and hoping for cure ect who despite what there going through give us so much joy.

sorry to be blunt.......but get a grip of yourself,get some antidepressants if need be.
i dont mean to sound harsh,i just think you need a bit of a push to get you out of the dark place your in.
please for the sake of your wife and kids.....get out and live
Olly , Big Hug for ya .

Andy, Olly has got it correct. The only person that will get you out of that damned darkness is you. I have seen it from both sides (Wanda and I) . Dont give up and stay where you are , get some help from a doc.
GlenBrittle is offline  
Old 10-25-2009, 12:26 PM   #14 (permalink)
Extremely Helpful Member
Registered Member
 
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Posts: 2,766
olly is on a distinguished road
Default Re: ALS Fasciculations

andy,i was worried about my post. i am glad you did not take it the wrong way.
you know us northeners are a tough as old boots,we tell it as we see it.
see........you still have a sense of humour

honestly,laying on the sofa and sleeping for hours on end its no wonder your poor body reacted the way it did
build up the exercise and just focus on sorting your head out.


glen. (((hugs)))back
olly is offline  
Old 10-25-2009, 03:12 PM   #15 (permalink)
Extremely Helpful Member
Registered Member
 
BarryG's Avatar
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Posts: 2,999
BarryG is on a distinguished road
Default Re: ALS Fasciculations

Caroline, we all know that you're not as tough as old boots! In fact, we know that you are really a softie, almost as much as Glen.

Andy, I really do think that while the internet is a wonderful thing that allows us to learn many things and connect with friends it can also be a nasty source of misinformation. The more that you google, the more symptoms you will connect to all kinds of things. You need to get up and do physical things like going for a walk, playing with your kids or even chasing your wife around the house.

My wife will not me sit around all day, she tells me to get up and wobble around the yard because even though it tires me I feel better after. And we have big, bad Mr. Winter with snow, cold and darkness coming to visit soon and there will be plenty of time to sit around then.

BarryG is offline  
Closed Thread

Tags
age, als, atrophy, early, fasciculation, fasciculations, muscle, muscle twitch, symptoms, tests, twitch, twitches, weakness


Currently Active Users Viewing This Thread: 2 (0 members and 2 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search


Similar Threads for: ALS Fasciculations
Thread Thread Starter Forum Replies Last Post
Fasciculations BNR1 General Discussion About ALS/MND 14 10-15-2009 05:01 AM
fasciculations marywest45 People With ALS - "PALS" 13 08-15-2009 10:28 PM
Fasciculations concerned923 General Discussion About ALS/MND 3 04-12-2007 06:02 PM
Fasciculations Lisa Lane People With ALS - "PALS" 18 09-11-2006 12:11 AM
Fasciculations, what to do? ladave General Discussion About ALS/MND 3 03-07-2006 09:39 AM


    
   
   
   
   
  ALSforums - Get help and support with ALS/MND