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sigmafloyd

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Hi all - I've been reading for awhile but have never posted. Thanks for all the great information. I was wondering if people could clarify a few of the symptoms that are commonly listed. Thanks in advance, best wishes.

Twitching/fasciculations: Are these typically constant or do they come and go. Is it more a twitch here, then 10 minutes later a twitch there, or more rapidly?

Cramping: I know a lot of people who think they may have ALS confuse any pain that comes up with a cramping pain. How severe is the pain usually and does that come and go as well?

Numbness/Tinging: I've read mixed reports on whether or not n/t can be related to ALS.

Atrophy: Would atrophy come before or after the other symptoms and would it be visible in a hand that is behaves normally?

Thanks!
 

brooksea

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OK- I'll jump in!

I'm no doc, so take my info as experience, not clinical advice. ;-)

My husband's fasciculations have always been constant. They did not and do not come and go. They are not willy-nilly in their whereabouts. They started in left hand, then left forearm, then left upper arm, then across his shoulders, and progressed down the right arm. This was over about a year. His tongue also started twitching at the same time the hand did.

Pain has not been a symptom for my husband, except, when he gets a terrible cramp and cannot relax the cramp without help. The cramps have followed the same route as the fasciculations.

My husband has no numbness or tingling.

The atrophy also followed the same route as the fasciculations. Left hand and forearm are very atrophied at this point.

I'm sure others will have their own opinions to offer and you will become further confused! LOL:mrgreen:
 

sigmafloyd

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CJ - thanks so much for your response. I wish you and your husband all the best.
 

tmasters

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My turn. But my caveat is that I am still in the process of being diagnosed and so far I have only LMN signs.

Fascs: For me, they started in my calves, as did my other symptoms. Right now, a year after my first symptoms, I have twitching all over: legs, butt, back, side, arms. Most of them are in my upper leg muscles though. I try to tune them out most of the time, but I notice them more when I'm laying in bed trying to sleep as I'm quiet and not busy with anything else. Last night I was trying to determine: seems like every few seconds I get a twich in one or the other leg, and it happens all throughout the day (I think), ever few seconds. In other areas the twitching is less common.

Cramps: My worst cramps are in my calf muscles. They can be pretty bad. Happens mostly at night and I jump out of bed and stretch the muscle then it subsides. I also get cramps in my fingers, back, and side muscles. These aren't as painful but I can't stretch my side muscles out easily so those can go on for a long time. I can usually avoid these by not stretching too far too fast.

Numbness/Tingling: I have none of this. When my neurologist examined me he was checking for this but I found out later that if I had numbness it would point AWAY from ALS toward some other problem such as spinal stenosis or CMT. ALS only affects motor neurons not sensory neurons so there should be no numbness or tingling. I guess if a patient has multiple problems (ALS+some other malady) it could confuse the diagnosed.

Atrophy: I have very little of this so far. My understanding: It comes from muscles going unused for an extended period and then wasting away. So as the disease slowly progresses from my legs to my arms, to... I would expect the atrophy to slowly progress in those same areas, but follow the other symptoms by several months.

-Tom
 

dimd00d

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Hi,

I no longer think I have ALS (neither does my neuro), but can correlate to your symptoms:

Twitching: started here and there probably about 8 months ago - now they are everywhere from toes to scalp (including tongue etc) almost constant when I overdo the coffee or after excercise.

Cramping: I dont have cramps, but I do have cramp like pain occasionally - its just that the muscle does not knot and is less severe than an usual cramp.

Numbness/tingling: thats how it all started actually - the tingling was so bad it was waking me up.

Atrophy/weakness: none and despite the bodywide twitching I run 5km every morning and I am putting muscle mass all over the body. afaik, you should probably be able to spot the atrophy by yourself , just dont overreact, no one is totally symmetric.

See a neuro and relax :)
 
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