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Author Topic: Please help me with my ALS scare  (Read 296 times)

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Offline joycecaroll

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Please help me with my ALS scare
« on: May 17, 2014, 05:38:01 PM »
Hi!

For a couple of months I've been really scared of having ALS. It started when i began having occasional muscle twitches in my body and a vibrating feeling in my feet. Being av nurse student the first thing I came to associate with these twitches with were of course ALS.

I saw a neuro about it and she did a full neuro exam and said I didn't have ALS. She said ALS twitches is focused on a specific body part, not all over the body at random. I felt very reassured and could let the ALS scare go.

I few days after this I woke up with a focused twitch next to my knee cap. This twitch went on for a good 24 hours. This scared me since the neuro said focused twitches is typical for ALS.

4 weeks have gone since these twitches next to my knee cap stopped. Should I be worried? Do ALS twitches come and go like this or do they stay once they're there?
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Offline madmexican808

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Re: Please help me with my ALS scare
« Reply #1 on: May 17, 2014, 05:47:33 PM »
Hi!

For a couple of months I've been really scared of having ALS. It started when i began having occasional muscle twitches in my body and a vibrating feeling in my feet. Being av nurse student the first thing I came to associate with these twitches with were of course ALS.

I saw a neuro about it and she did a full neuro exam and said I didn't have ALS. She said ALS twitches is focused on a specific body part, not all over the body at random. I felt very reassured and could let the ALS scare go.

I few days after this I woke up with a focused twitch next to my knee cap. This twitch went on for a good 24 hours. This scared me since the neuro said focused twitches is typical for ALS.

currently dealing with an als scare as well. there needs to be clinical weakness and muscle wasting then twitches.

4 weeks have gone since these twitches next to my knee cap stopped. Should I be worried? Do ALS twitches come and go like this or do they stay once they're there?
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Offline Nk904

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Re: Please help me with my ALS scare
« Reply #2 on: May 17, 2014, 05:56:17 PM »
And we have another als scare...dude, I've had twitches nonstop for five months. You're ok.
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Offline ShawnW

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Re: Please help me with my ALS scare
« Reply #3 on: May 17, 2014, 06:27:50 PM »
Joyce as I am writing this my forearm has been rapid firing for a good 2 hours.  It's called a hot spot.  While random twitches around the body are less concerning...hot spots are no more concerning unless they are accompanied by true clinical weakness.  I have heard of people having hot spots for years without deficit.  24 hours would barely be considered a hot spot.  *** is already very rare but VERY rare in young women.  You shouldn't lose sleep over it.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

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http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline joycecaroll

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Re: Please help me with my ALS scare
« Reply #4 on: May 17, 2014, 06:43:10 PM »
Thank you so much! I feel a lot better already. After 4 weeks I should have noticed some weakness around my knee cap by now right? Is there any way I an test this?

I know that twitches occurs after atrophy and weakness, but I guess I get insecure about this because some ALS-patiens have claimed that the twitches were there first symtom. Any thoughts on that?

Also, do you know anything about the difference between ALS twitches and benign twitches? For example, do they look different? Feel different? Do ALS twitches usually stay longer than 24 hours?

Any answers would be very much appreciated! 
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Offline ShawnW

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Re: Please help me with my ALS scare
« Reply #5 on: May 17, 2014, 11:21:01 PM »
Thank you so much! I feel a lot better already. After 4 weeks I should have noticed some weakness around my knee cap by now right? Is there any way I an test this?

I know that twitches occurs after atrophy and weakness, but I guess I get insecure about this because some ALS-patiens have claimed that the twitches were there first symtom. Any thoughts on that?

Also, do you know anything about the difference between ALS twitches and benign twitches? For example, do they look different? Feel different? Do ALS twitches usually stay longer than 24 hours?

Any answers would be very much appreciated!

I think you need to stay off *** sites and certainly away from those stories.  First, we do not know the accuracy of such stories.  Also, I know a many of an expert that would argue that even though twitching was their first complaint, a neuro exam would have revealed some sort of abnormality.  Twitching before weakness or atrophy doesn't make medical sense.  Twitching is a result of dying nerves and muscles...almost always long after the weakness.  As for some twitches being more or less worrisome, experts can't even agree on the subject.  I won't go into the debate here but the fact that you can feel them is probably a good thing.  My partner is a neurologist and he said Shawn I never chase twitches...I chase deficit.  He did an exam on me told me to chill out.  I of course didn't believe him.  I went to a second neurologist who basically told me the same thing...did an EMG and nerve conduction just to appease me.  That forearm hotspot of mine is almost constant been going on since I wrote you this afternoon.  Very common.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline GADawg87

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Re: Please help me with my ALS scare
« Reply #6 on: May 17, 2014, 11:36:08 PM »
With ALS, you always have noticeable weakness and muscle atrophy before twitching. In fact, ALS twitches are usually so fine that they are hard to see unless directly under a microscope. I went through the same issues that you are experiencing around a year ago whenever I started randomly twitching on the side of my calf. During the past year, I've twitched on my both feet, at the elbows, neck, side of scalp, and even on my buttocks. ALS does not have random twitching and usually just focuses on one specific spot such as the hands, feet, tongue (rare) and leaves behind a trail of wasted muscle cells. Random twitching is completely benign.
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Offline madmexican808

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Re: Please help me with my ALS scare
« Reply #7 on: May 17, 2014, 11:51:13 PM »
With ALS, you always have noticeable weakness and muscle atrophy before twitching. In fact, ALS twitches are usually so fine that they are hard to see unless directly under a microscope. I went through the same issues that you are experiencing around a year ago whenever I started randomly twitching on the side of my calf. During the past year, I've twitched on my both feet, at the elbows, neck, side of scalp, and even on my buttocks. ALS does not have random twitching and usually just focuses on one specific spot such as the hands, feet, tongue (rare) and leaves behind a trail of wasted muscle cells. Random twitching is completely benign.

what I dealt with. Kept having neck twitches on the right side, then it stopped then next thing I know twitching on left tricep then right hand, forearm area. no weakness though. still kinda freaks me out though.
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Offline joycecaroll

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Re: Please help me with my ALS scare
« Reply #8 on: May 18, 2014, 05:25:28 AM »
Thank you so much for these answers!! I feel so reliefed! So, if I understans this correctly:

1. Once ALS twitches DO go away, you are ALWAYS noticeably weak in that spot? They can't go away and leave a perfectly functional muscle behind?
2. Twitches NEVER come before weakness and atrophy?
3. Clinical weakness would have been noticeable in the neuro exam that I had two days prior to the twitching beginning in my knee cap?

And my final question: any reassuring thoughts on time frames with twitching? I'm thinking that ALS twitches in one focused muscle should last longer than 24 hours regardless of weakness and atrophy?

You've truly helped me feel so much better about this. I've been really depressed and scared for so long. I even had to quit school for now since the nurse program just made my ALS fear worse.

So thank you so much <3
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Offline joycecaroll

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Re: Please help me with my ALS scare
« Reply #9 on: May 18, 2014, 06:23:49 AM »
Also, any thoughts on this:

"Amyotrophic lateral sclerosis (ALS) is a serious neurological disease that attacks the nerve cells that control voluntary muscles. It may begin with muscle twitching or weakness in an arm or leg, or with slurring of speech. Eventually, amyotrophic lateral sclerosis affects your ability to control the muscles needed to move, speak, eat and breathe."

I wanna cry reading this! Wish I hadn't found this.
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