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Scaredtodeath

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Aug 3, 2015
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Learn about ALS
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Ca
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San francisco
Hey everyone. Just wanted to say thank you to all of you who continue to help people out on here and I would appreciate if someone could answer some questions I have.

It all started with my neck moving involuntarily over a month ago, I looked up twitching and saw ALS as a possible cause and by the next few days I was twitching basically everywhere. I still get it most places a month later but it's most constant in both of my calves. I've also been having sleep problems. Every time I try to fall asleep my body jerks me back awake to the point where I've been getting no sleep at all and its interfering with my work. I also have random arm and leg jerks while I'm at rest and I read on an ALS website that that could be a sign of ALS so now I'm extra freaked out.

I have a doctor appointment tomorrow and hopefully he can refer me to a neuro. But does this sound like ALS? Does the body jerks happen at onset or is it later on when it's progressed? I'm so scared. I'm a 27 year old male.
 
You have nocturnal myoclonic jerks. They occur when you relax and then they wake you up. I've had it for three decades, and I'm perfectly healthy, with no ALS. Nightly medication will control this just fine. Your doctor will probably diagnose Restless Leg Syndrome. My own "restless legs" occur all over my body.

Twitching is really common. In fact, twitches are so common they're not diagnostic of anything. When my muscles twitch, I consider it amusing.

Don't sweat ALS. I just looked at an ALS database of 1800 patients, and found only 3 people below 30 years old. It's an old person's disease.
 
Thanks so much! I know the jerks that wake me up are harmless, but I'm worried about the limbs moving on their own before I fall asleep. I heard that's a symptom of ALS and that's what set me off.
 
> It's an old person's disease.

Hey!
 
Thanks Nikki. I read it all.

When speaking with teens and 20s, I use the phrase "old people" from their point of view--people 50 or older. I use this phrase to calm down the young twitchers.

Of course, 59 isn't old from a 59-year-old's perspective.

I believe average age at ALS onset is 55, according to the literature and the data I've seen.

Sorry Greg. Nikki's right about my perspective: In the service, 50 is ancient. Only retiring generals are that old.
 
... I'm worried about the limbs moving on their own...

Scared: The hallmark of ALS is a muscle that doesn't move because it's so weak. If you had a limp, useless, paralyzed muscle I would worry that something serious is wrong. Even then, there are many, many conditions that would cause that, nearly none of them fatal.

Sleep well tonight and don't sweat ALS. See your doctor in the morning and I'm sure she'll fix you right up.
 
When I was an undergrad I took a course where we were told to assign age ranges to Erickson's 7 stages of development, the last one is older adult. One of my classmates managed to complete it with the older adult phase beginning at 26. The professor who was probably in her midforties was VERY offended. Perspective is everything! ( sorry for the hijack)
 
Nikki, that's funny. Thanks for the laugh.
 
Thank you guys so much! I appreciate it from the bottom of my heart. I saw 3 different doctors at Urgent Care and they said this could be due to the fact I drank every day heavily for 4 years and anxiety. They gave me strength tests and did my reflexes and said everything is fine. Do you think I need an EMG? I'm broke and I don't know if I can afford it.
 
1. The strength and reflex tests are important. You passed. If they thought there was a problem, they would have ordered more tests, possibly including an EMG, but they saw no reason to waste your money on an EMG.

2. Drinking does exacerbate the myoclonus. I don't know why. But when I have a drink, I'm guaranteed to stay up all night fighting my jerking legs. I don't think drinking caused the disease. But I don't know for sure.

3. Ask your doctor if an EMG is warranted.

PS: I'm not a doctor so I shouldn't diagnose you, but I know ALS fairly well and you shouldn't worry about it.
 
You don't need an EMG. Save your cash and use it to develop some new hobbies/interests in the real world in which many here can no longer interact as they would like, and that keep you off the Net and sites like these. At your appointment tomorrow, ask your PCP for a prescription to hold the jerks at bay; as Mike says, RLS is a definite possibility and there is a standard questionnaire to confirm. All the best.
 
Update: So I went to my PCP and he gave me Klonopin for the night jerks, hopefully over time they'll subside, hoping its just due to intense anxiety and stress. I told him about my twitching all over and he gave me strength tests, and reflex tests and said everything is normal. But now he wants to take a blood test to check my CK levels which really had me freaked out. Why would he order that test if he didn't see anything wrong? I'm so scared I don't know what to do!
 
You should have asked the doctor why. It is not a test that is abnormal in ALS but a fairly non specific test for muscle damage. It is often somewhat elevated if you have had recent physical exertion so even an abnormal result is often meaningless
 
I can't tell over the Internet why he ordered a CK test. But you can take Nikki's answer to the bank, as she knows these things really well.

Scared: You're freaking out for no reason whatsoever. Take the klonopin. It will reduce your anxiety as well as stop the night jerks.

The strength test is good enough. You don't have ALS weakness, so you have no ALS to worry about. Live long and prosper.
 
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