ALS muscle twitching

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spud01

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Jeannie,

I will get this posting stuff sooner or later, I apologize to everyone who possibly keeps reading my same posts over and over.

I wanted to ask everyone about muscle twitching. Specifically, the characteristics, is it early or late sign. Is it constant or just isolated, is it scattered or localized, and if it is associated with other symptoms. It seems this is my major symptom thus far.

Any information is appreciated.

Spud 01
 

whitey

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muscle twitches

My muscle twitches are mainly behind my upper arms and last for 5-15 seconds usually later in the day.

whitey
 

ladave

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If the twitching is related toALS, then it is called fasciculations and is caused by irritation of muscle fibers due to nerve degeneration and/or reinnervation. Every ALS patient is different, so it is hard to say if they are an "early" or "late" sign. For me they were the first symtom and preceded any weakness or atrophy. I now have them all over my body, in regions otherwise unaffected (i.e., no visible weakness or atrophy). Mostly they serve as a constant reminder that I have this wonderful disease.

The thing is, fasciculations (twitching) can be benign- or caused by many other things besides ALS. So if you only have twitching without other ALS symptoms, you probably don't have ALS. Only a qualified neurologist can tell you for sure. Good luck.
 

Al

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My fasciculations were my first outward sign. Started in righ tcalf and more than 3 years later they are everywhere below my shoulders along with some atrophy and breathing problems associated with the atrophy.
 

spud01

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Thanks for the info

Thanks for the information. This site is so informative. It appears that the muscle fasiculations are in itself an early sign. Everyone seems to have them before any weakness or atrophy. Is that what brought you to your neurologists, the fasiculations.?

If you read informative sites on ALS (medical sites). It appears the twitching is a sign that comes after deterioration and weakness and atrophy. They say the twitching is due to the wasting. Well, now I have learned that is not true.

that is the main reason my PC sent me to the neurologist, which has now brought me to the testing and diagnosis stage. How long after the EMG and NCS did a diagnosis come for everyone.


Spud
 

spud01

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Emg Ncs

If anyone can give me insight on EMG and NCS, what to expect. Is it painful. Will they be able to tell from these tests if you have ALS, or can I expect more tests.

Spud
 

hope

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My husband had muscle twitching as a first sign of als, he had one little twitch in his left arm that was there all the time. Over the last year it is now widespread. About a month or so ago he has now been told the twitching is in his tongue and face. He has it everywhere now. He has lost muscle in his hand and arms.

Sandy.
 

ladave

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spud01 said:
If anyone can give me insight on EMG and NCS, what to expect. Is it painful. Will they be able to tell from these tests if you have ALS, or can I expect more tests.

Spud
Don't want to scare you, but the EMG and NCS do cause some discomfort. For the nerve conduction study, you will receive small electric shocks on your arms and legs. For the EMG, small needles will be placed in various muscles. These studies will reveal whether there is any "denervation" of your muscles, which is critical to determining whether you have ALS. If the EMG is normal they can pretty much rule out ALS. If the EMG shows denervation, they will do other tests to rule out conditions which can "mimic" ALS.

The diagnosis of ALS is based upon the "El Escorial" criteria, which you can read here:

http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

One thing you should know is there is currently no single test that can diagnose ALS. The EMG is crucial but must be looked at in the context of clinical findings. Here's hoping you do not have it!
 
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Al

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I'd have to agree with Dave. Not a lot of fun but not as scary as it sounds. Heck after 4 or 5 times it's a piece of cake. If you get enough opinions and each one should have their own tests to work with it does get easier. After you've had it done remind me and I'll tell you another story. Don't worry though.
Al
 

spud01

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emg NCS

Thanks Dave and Al,

Oh boy, I can't wait.

Spud (Terri)
 

margeo55

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hi my muscles are twitching most of the time, not all at the same time.
does anyone have cramps? like the muscle tighten right up, for 30 sec to a minute and then lets go. i have been having them quite often especially in the lower calf muscle, also about once to twice a week in my neck muscles?
painful as ever,can't do a thing until they release.
marianne
 

ruby ben

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Spudo1

Hi - I am in year 3 1/2 since I started limping anhave never had twitching or fasciculations but I do have atrophy in my right leg - we are all different..............ruby from vancouver
 

Al

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Hi Marianne. Do your cramps happen at any particular time? I find mine will cramp in bed if I position my leg a certain way. Has any of your doctors suggested Quinine for the cramping?
Or has it not been a big enough of a problem that you haven't mentioned it to them?
 

margeo55

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hi al
usually the cramping is more in the evening and during the night. i did mention it once but they didn't discuss, maybe i'll bring it up again a s it is happening more often.
marianne
 

Al

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Yes you should. A lot of times if you go into the doctors and don't have any specific complaint or questions written down it can be very nonproductive. It will probably get worse before it gets better so some meds would be a good idea. As I've said before 300mg of Quinine has been working well for me for more than a year now.
 
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