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Wonka

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Learn about ALS
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Saginaw
A couple of months ago I began experiencing an odd pain in my lower right leg. It was very hard to explain, but seemed to be a deep pulsating pain that lasted between 30-60 seconds and came on around 5 to 10 times per day. Being the curious person I am, I ended up on Google looking up causes for bone pain. Finally, I went to my doctor (D.O.) who said it sounded like it was an irritated nerve and manipulated my back. After I got home I ended up on Google again looking up possible nerve disorders.

About a week later the pain persisted and I noticed twitching in my quad muscle (right above the knee). I looked up “muscle twitching” and found info on ALS, which I probably sat and read for over an hour. This began to freak me out to a certain extent. Later that day my bicep on the same side started twitching in a similar manner. These were light twitches that you could visibility watch them under the skin. I once again ended up on Google reading ALS articles. The twitching ended up going away a day later, but around the same time I developed a very strange sensation in the same leg that caused me to constantly feel the uncontrollable need move it. I was unable to sit still and either had to tap my foot, curl my toes, or get up and walk around. This was driving me crazy so I went back to my doctor.

The doctor said he still believed it to be nerve related, but could be accompanied now by some sort of restless leg syndrome due to stress. He manipulated my back again. During the visit I told him I was scared I had ALS because of the twitching and he said he didn’t believe it to be the case because I’m 32 and showed no signs of weakness. He told me Google wasn’t helping and said that if it was ALS it would probably be too early to pick up on tests and I’d have to wait 6 months.

Since that appointment my right shoulder twitched for a few days, my right quad has begun twitching again periodically, and my right eyelid has been twitching a couple times a day. I have also felt twitching in my abs and left foot at times. Any recommendations on what I should do? Go back to the doctor a 3rd time?

Am I stressing myself into twitching? Does any of this sound consistent with ALS? I have been running and playing fairly competitive basketball the past couple weeks and haven’t noticed any weakness. Thoughts?
 
How many times do we have to tell you people.......als does not start with twitching muscles,especially wide spread twitching.
Als starts with slow descreet clinical muscle weakness in one area and by the time you see a neurologist it will be evident to them on examination.
You probably had a trap nerve that irritated the muscle then you developed anxiety resulting in bfs.

PLEASE READ THE STICKIES!.
 
Believe it or not, I read the stickies prior to posting...

This has been weighing on me and it explaining it to people with firsthand knowledge seemed like a good idea.

Although I just stumbled upon this site a few weeks ago, I can say it’s truly amazing what you guys do for both those with the disease and those fearful that they might have it! I just made a small donation and hope you guys continue to encourage one another.
 
Wonka,i honestly feel your fine and nothing points to als .
Go live your life to the full,the odds are your more likely to be hit by a bus than getting als.
Thankyou for your kind donation.
Take good care.
 
I'm with Olly on this one!
 
It's not at all likely to be ALS--but do be sure you haven't pinched a nerve as the pain from those can worsen over time. It bears repeating, ALS doesn't have pain as a first sign, nor, generally, twitching.

Good luck and we all appreciate the donation to keep the site going. This little ALS scare has made you aware of the disease. Being an advocate for things like ALS is not only helpful but rewarding.

Best to you
 
Thanks for the responses. You guys are awesome!

Unfortunately my twitching has gotten worse… both feet, legs, eye lids, face, etc… “twitch, twitch, twitch, all day long… twitch, twitch, twitch, while I sing this song!”

No signs of weakness. In fact, I’ve run a 5K since my last post. I’m getting some blood work tomorrow and hope to get to the bottom of it. From what I’ve read, full body twitching without any noticeable weakness is not a sign of ALS?
 
No signs of weakness...NO ALS, period.

ALS manifests itself as muscle weakness first and it usually starts distally (which means the muscles that are farther away from your body trunk such as feet or hands).
Secondly, it starts on just ONE foot or one hand, not both.
Thirdly, you notice weakness when you no longer can do things you used to do very easily (e.g. Opening a jar or a bottle o drinking water, etc.) if it's the foot, you will notice you are going to start tripping on uneven surfaces (foot drop).
Once you notice weakness on that ONLY limb (either the hand or the foot) then you will see fasciculations (also known as twitching).

Once the fasciculations are gone, then you will notice loss of bulk muscle mass on that hand or foot, which is called atrophy.

You see?

None of what you describe is remotely similar to ALS so, my advice to you is to quit worrying and live your life the way is meant to be lived, without anxiety, because fear, stress and anxiety will trigger muscle twitching on you that is not related to ALS.

Regards,

NH
 
Willy Wonka,

Your fear and growing obsession can cause twitches!

The day you can't button your pants, use a door handle, fall on your face or choke on your saliva, that's the day you should worry.

Till then, twitch away, and don't worry. When you stop worrying, you'll stop twitching. Honest.
 
That last bit isn't precisely true - some folks with BFS twitch for years calmly having put the thought of ALS behind them. It is just a constant annoyance that comes into their life and stays there. But twitching without weakness isn't dangerous or worrisome, and you can put that stuff out of your mind.

Notme's advice about making sure you don't have a pinched nerve is good, too!
 
run 5k.....run 5k....yer fit as a butchers dog.......blimey, give us all a break.......johnny
 
Beky is, of course, absolutely right about BFS lasting years. There is no doubt in my mind that she and Notme and others are the most knowledgeable people around here!

To clarify, I opined that your particular twitching ( from my perspective) will decrease when you stop worrying. This, simply because yours seem to be intensifying lately, consistent with your growing concern about it. I personally believe there is a correlation (in my case) between emotions and twitching. On Tuesday evening, following an extremely emotionally charged event, I experienced intense body wide twitches; my teeth chattered as well. Since my ALS twitches typically only occur on my left affected side, are mild and just very minor irritants, I can only conclude this anomaly was due to emotions running so high. As I calmed down they disappeared. This is the reason I suggested your twitching will ease off, as your concern about it eases off.

I apologize for any confusion my post may have inadvertently caused you. Wonka, I'm happy you had a good 5k run..... I so miss running; it was my favourite!
 
Getting folks to understand that most commonly, those with ALS (and other causes of nerve-muscle death) have fasciculations. These are often minute and not even noticed by those affected with them until long after weakness is observed.

When one has body wide twitches...those are not like the fascis noted in ALS and other conditions that damage muscles, most generally.

Like Elaine said...a stressful day increased hers everywhere...but normally, hers are confined to her weakened damaged areas. Keep in mind, her weakness is clinical...it's documented, it shows on exam and EMG. It's there 24/7. Why? She's losing muscle mass from ALS. Eventually, once all muscles in the area are gone, the fascis will stop.

Folks here use the two terms, twitches and fasciculations, to mean the same thing. They aren't really. Not when it comes to ALS. In ALS, they are ALWAYS caused by muscles dying.

Some will have them from a specific nerve path being damaged...again, localized. General body wide twitches are not ALS. At least not early ALS.

And even if they are confined to one area, like in me, my hands, it doesn't mean ALS unless all other causes are ruled out. I never even saw them until a neuro pointed them out and asked how long my hands had been doing that. I never felt them. Still don't. But, if I look at my hands, I see them in the muscles that are not totally wasted yet. They stopped ages ago in the dead and atrophied muscles.But I had major weakness before they were ever found. I knew I couldn't push buttons or open jars or turn a car key. The doctor could determine the reflexes were gone and the strength was very diminished. And still...it doesn't mean ALS until there is NO OTHER ANSWER.

Here's a quote on them from a neuro.

A twitch is NOT necessarily a fasciculation, which is defined physiologically as an involuntary firing of a single muscle nerve cell that results in a muscle contraction typically not strong enough to move a whole joint. There is a specific pattern seen on EMG of a fasciculation and many neurologists can distinguish the two on examination.

The above is common in ALS, and other conditions that can damage nerves/muscles...without clinical weakness, he went on to say, they are most commonly BFS.

BTW, one of the other causes noted in this article was EXERCISE. 5k, wasn't it?
 
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Thanks again, talking to you guys helps a ton! It’s also been very enlightening.

Deep down I agree that this is most likely the result of stress/anxiety that Dr. Google intensified. I have felt the twitches in almost every muscle imaginable (feet, calves, quads, back, bicep, shoulder, and eyelid). It seems to end up in one place for a couple days and then moves on. I also feel a frequent uncontrollable urge to move my legs.

I have many of the behaviors outlined in the stickies (yahoo voices articles). For instance, I’ve found myself making up my own strength tests. I guess my thoughts are, “man, if I’m twitching everywhere this is real bad and weakness should be right around the corner…” I HOPE after reading your replies, I can move on.
 
You have it backwards.

The twitches come AFTER the weakness in most with ALS, not the other way around--and also AFTER weakness in other causes of non-benign twitches.
 
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