ALS related ?

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ALS related ?

Postby fabfab on September 27th, 2004, 4:32 am

Hi everybody,

I'm the french guy talking about fear last week.
Here are some news : this week end, I have had much less fasciculations than usual. I don't know why. Some of them still remain, but all in all, there is a real improvement. How is this possible ?
One thing I have noticed is : it seems to be related to the quality of my sleep. Also, fasciculations tend to appear on specific locations depending of what muscle has been used. For example, this moprning, my legs were aching beacause I had my daughter on my shoulder + a heavy bag on my back, and soon as I sit down, guess what ? Fasciculations, you got it.
Also I am still worrying, like many of you, about muscular atrophy/weakness and sla symptoms. So far I have noticed no atrophy, tough it's hard to tell, but I am more concerned about weakness. My right arm is causing me pain, especially the shoulder and the elbow. Since this pain is associated with "subjective" weakness, especially in the hand, I wonder if this could be the cause ? I've got the feeling my arm is weak but the truth is : I can still perform daily routine, like lifting a bag, opening a box, etc. It's just that the fatigue comes much more faster.
So my questions are :
1) can ALS-related fasciculations "come and go" like it's the case for me ? I've read so much contradictory stuff on that matter on the net...
2) can ALS-related weakness be related to pain ? Is it something evident ? I've also read that weakness always begin in the extremities, toes or fingers, and since my shoulder hurts... Also, I've realised that when I slept, my right arm was often "behind" my head : could this cause a sense of weakness all day long ?
I feel I'm at the beginning of somethin here : fear could go away if the answers to my questions are clearly ALS -exclusive - or I could start to really panick...
For the recall : I'm 32. I've seen a neuro 2 months ago, she said no EMG was necessary since reflexes and strength test were normal, and a doctor last month, who said fasciculations were caused by worries. Gave me magnesium, which I took for one week, without apparent results.
Anyway I ask you to be really objective on that one, and not saying stuff you're not sure of.
Sorry for the self-centered, fear-induced lament. I guess it sounds familiar to many of you.
Thanks for everything and pardon my approximative english...
Fabrice
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Postby Stephanie on September 27th, 2004, 8:14 am

Nothing about als comes and goes--it is progressive. I have had on and off pain like what you describe in my left arm, which twitches the most. Sleep can affect twitching and also anxiety. ALS does not have pain as a symptom. I think we all (me includeed) tend to over analize our aches and pains. Hang in there.
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Postby fabfab on September 27th, 2004, 8:39 am

Thanks
But what worries me the most is weakness. What about this f****** sense of weakness ?
For example i am doing push-ups every day - now i'm doing 15+ in a session, and after that it hurts ! 20/25 is a maximum for me in a minute, is this enough / normal for a 32 old man ? (I'm not practicing sport except for that).
On a daily basis, I've got the feeling that my arm and hand are weak, that I WON'T be able to take this spoon, or to open this box, but in fact I can, and every time without problem. Did anyone ever experience this ? Is this stress, nervosity or something else ? Sorry if I'm a little bit "out of the subject" but we know that many of us are here for als-induced fear, don't we ?
Thanks again.
Fabrice
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Postby Stephanie on September 27th, 2004, 11:03 am

I can guarantee that this feeling of weakness is anxiety because I suffer from the same thing. On top of that, when there's even a slight chill in the air, my fingers are stiff- which to me seems like clinical weakness. As I write this my feet and legs are twitching up a storm. I am always doing strength tests which I "pass", but the feeling of weakness or impending clinical weakness is always there. You're not alone.
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Postby mike3456 on September 27th, 2004, 12:59 pm

I also had a week where fasc. stopped or greatly diminished. My neuro said that the frequency of fasc. would worsten or least remain constant if it were ALS. I'm also is a period of high-anxiety right now, so I sympathize with you. My neuro also said that he did not want to do an EMG, but I nicely explained my high anxiety and told him I would feel better if I got one, so he agreed. Mine is Wed. and I'm very nervous about it, but feel I need to do it for peace of mind. I also have had a weak feeling in my shoulder/bicep, though it has improved a little over a few days. My main doctor (GP) said that chronic high anxiety causes tension in the muscles (shoulders for me) making them less tolerance normal use (paraphrasing, something to that effect). This could cause the perceived weakness/muscle fatigue/aches even if you think you didn't do anything overly strenuous.

Hang it there...I definately know how you are feeling.
-Mike
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Postby Stephanie on September 27th, 2004, 1:48 pm

My neuro said that the frequency of fasc. would worsten or least remain constant if it were ALS.

Yikes--mine has never gone away, in fact it's worse. I'm also still hung up on the fact that I have slow nerve conduction in my left arm which twitches the most. And also slightly hung up on the fasics showing up on emg. My neuro btw was not concerned so I guess I'm over-analyzing. My husband said to me last night "do you realize how you sound to a normal person?" He's so supportive which is why I come here! :)
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Postby graberc on September 27th, 2004, 4:59 pm

Your english is great, I wish my French was so strong!

(no French, but I love France!)

Anyway,
weakness in ALS is very specific. Such as in the fingers you can no longer open them up so your hand is in a constant grip. . .or your wrist, or foot drops so you can no longer stand on your tip toes or on your heels.

Weakness in ALS is not hidden or subjective
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Postby mike3456 on September 27th, 2004, 10:31 pm

Stephanie, didn't mean to scare you. The opposite certainly isn't true. Staying the same or more twitching doesn't mean anything, from everything I've learned here. Everyone's twitching seems a little different as far as frequency goes. I even told my neurologist maybe they were there and I didn't *notice* them that week and he wasn't concerned one bit.
-Mike
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