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shopathonic

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I have read on this forum that some people with ALS noticed muscle twitching as their first symptom, followed later by weakness, atrophy, etc. One person stated that his first symptom was twitching in his calf muscles. I have had almost nonstop twitching in my calf muscles for a couple of weeks, along with a kind of buzzy feeling in my feet. There is also the occasional muscle twitch in my arm, around my clavicle/throat area (pretty rare at this point), and forearm (also rare). For people with ALS for whom twitching was their first symptom--especially leg or calf twitching--how long did you have that localized twitching before other symptoms developed, such as weakness, cramping, atrophy, twitching in other muscle groups, etc.?

Thanks for your help.
 

Blizna

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The people who said they have twitching as their very first symptom:

a) Often didnt notice present weakness in these muscles, some muscles you just dont need so much so its harder to tell they are weakes

b) ALS in almost all cases start in one point-region and then spreads. Twitching on many places is a good sign, because generalized twitching is sign of later stage of ALS - you would definitely know.

c) In numbers - 6,7 percent ALS patiens think they have at first only twitching and went to the doc - he usually found weakness in at least one limb.

Try to stretch your muscle - in ALS twitching continues no matter if the muscle is working or relaxed. ALS twitches also wont go away - they can change their intensity, but they are still present until the muscle isnt dead.

If you have generalized twitching, probably its BFS. Those people have also cramps and even weakness BUT its only for a very short time. Its benign condition but you only know you have it, when ALS is ruled out.

Of Neurology book for docs - (translated from me, sorry for mistakes): After 3-4 weeks after denervation (twitching) atrophy appears. Twitching can disappear and if appear later, that means there is proccesss of inervation.

Me personaly twitch for 4 months without any other symptoms. Im very anxious so sometimes I feel better, but I was able to work my muscles more than I had them before.
 

greg175csp

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First of all, welcome to the forum :D

I'll try to answer your question as best I can. For me, it's a hard question. Let me explain.

I noticed muscle twitches before I noticed any other problems. However, I have had bouts of muscle twitches for a variety of reasons throughout my adult life. My job was often exhausting and stressful and I would have days or even weeks where I'd feel like I was crawling in my skin. Was it related to my (later diagnosed) ALS? Probably not, but who knows for sure. When I did go to the doctor who first suspected ALS, I had had twitching AND cramps for, oh, about a year non-stop. By that time, I had toe drop in my left foot as well. I had just figured the twitching and cramps were caused by a vitamin deficiency or something.

Anyway, looking back, my twitching and cramps were probably the first sign of ALS, but who's to really say how long it was a symptom of ALS versus a symptom of my bad habits.
 

shopathonic

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Greg--
Thanks for your very informative reply. I have a couple of follow-up questions, if you don't mind:

1. You say that you had had twitching for much of your adult life leading up to your ALS diagnois, and that you had twitching and cramping for a year prior to your first doctor's visit. Was this twitching in a particular area, or was it noticeable in various areas throughout your body?

2. A poster in this thread claims that early ALS-related twitching is usually in one specific location rather than in multiple locations--true in your case or in general, as far as you know?

3. How old were you when first diagnosed with ALS?

Thanks!

Jeff
 

shopathonic

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Blizna:

Thanks for your reply. Do you have ALS? This is not clear to me from your post.

If you do have ALS, I am curious to know where you first felt twitching. Right now I have continual twitching mainly in the area of my calf muscles, with a very infrequent twitch in my right clavicle area--although this is very rare.

Thanks,
Jeff
 

Blizna

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Shopatonic: no, I havent been diagnosed with ALS. My diagnose is something like "benign fascicualtions due to stress and anxiety".

With ALS twitchtes there one important thing - many patients just dont notice their leg/arm is twitching - these twitches are very smooth and fine. Then it comes widespread and just now they feel twitching. Due to pathology of disease isnt possible to have twitches without any other symptoms for a months. It would be only case of very very rare and very very slow progression form.

You have probably BFS - many BFSers twitch on calves + everywhere for years (www.aboutbfs.com)
 

greg175csp

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Greg--
Thanks for your very informative reply. I have a couple of follow-up questions, if you don't mind:

1. You say that you had had twitching for much of your adult life leading up to your ALS diagnois, and that you had twitching and cramping for a year prior to your first doctor's visit. Was this twitching in a particular area, or was it noticeable in various areas throughout your body?
Well, again, that's not so cut and dry. The twitching and cramping I had for about a year prior to my diagnosis was primarily in my legs and abdomen. I would become super aware of twitching in my left thigh, for example, but my stomach would be twiching as well. I wouldn't really notice it unless it was brought to my attention somehow, as in a cramp (boy would I notice). Or I'd relax on the sofa holding a cup of coffee and it (the coffee in the cup) would be trembling when my arm was across my chest, then I'd stretch and my calf would cramp and I'd notice my legs were twitching too.
2. A poster in this thread claims that early ALS-related twitching is usually in one specific location rather than in multiple locations--true in your case or in general, as far as you know?
Not true in my case, but I have heard the same thing. In fact, one of the Dr's. at the Cleveland Clinic that saw me was mildly surprised that my twitches were so general. Other doctors were not (surprised)
3. How old were you when first diagnosed with ALS?
37
 

Midnight

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question about abdomen twitching

Hi Greg,
I was wondering if your twitching was in your lower abdomen and if so, was it single twitches or many in a row? My stomach (lower abdomen) twitches more than any other part of my body, yet it was not EMG'd.

Also, the cramping, did it go hand and hand with the twitching? Or, did they go on separately from each other?

Also, when you say you had a toe drop, was it your big toe and did it just no longer work or become lower than the rest of them? I am curious because although my EMG was normal, my doctor was quite preoccupied with the fact that my right toe was lower and he did the "rub on the bottom of your feet" test so many times on my feet. It happens that it is the side I tend to have more cramps and twitches in, as well as I have dropped at least a shoe size in that foot.

Thanks for sharing your story. I appreciate it so much.
 

greg175csp

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My lower abdomen is where I "felt" it more often than not and it was all over the area. I'd have a spot on the right side start, then another spot would twitch, back to the right side, then smewhere else. It was like popcorn popping, if you can imagine.

My cramps were "Kinda" separate. A twitch didn't usually cause a cramp, but a cramp most certainly caused that muscle group to twitch.
 

CindyM

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Hey folks- I just discovered something about twitches. Well, mine anyway. If I stay put like a good couch potato and don't move around a lot my twitches become almost unnoticeable. I never really pay much attention to them in the first place so it took me a long time to realize this. A busy day will fire them up and a busy active day makes both twitches and cramps run amok.
 
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Kewanee

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First of all, welcome to the forum :D

I'll try to answer your question as best I can. For me, it's a hard question. Let me explain.

I noticed muscle twitches before I noticed any other problems. However, I have had bouts of muscle twitches for a variety of reasons throughout my adult life. My job was often exhausting and stressful and I would have days or even weeks where I'd feel like I was crawling in my skin. Was it related to my (later diagnosed) ALS? Probably not, but who knows for sure. When I did go to the doctor who first suspected ALS, I had had twitching AND cramps for, oh, about a year non-stop. By that time, I had toe drop in my left foot as well. I had just figured the twitching and cramps were caused by a vitamin deficiency or something.

Anyway, looking back, my twitching and cramps were probably the first sign of ALS, but who's to really say how long it was a symptom of ALS versus a symptom of my bad habits.


Greg I also want to know more about the toe drop.
Did you feel it happening? Were there any impulses running between knee and foot or toe that you could feel before this ? Any zapping nerve feelings?
 

CindyM

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I have the zappy nerve feelings in both legs but the right toe drops when I'm really tired. I have to think when I am walking or I will trip. I stumble a lot but manage to stay upright.
 

shopathonic

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Cindy--
I notice that you've been a member since 2006. Have you been diagnosed with ALS? This is not clear from your posts.

Thanks,
Jeff
 

CindyM

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No, and I am about ready to declare myself cured, (at least for tonight.) The changes in my symptoms are so subtle that I don't even report them. I am on a six-month review with the ALS clinic, where they said to prepare myself for getting worse but but they also said I might stay the same. I am planning on staying the same. I cannot climb or jump or hop on either foot but at my age I didn't expect to play hop scotch anymore anyway!:-D
 
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