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Author Topic: ALS fears are driving me nuts.  (Read 295 times)

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Offline Sivils1

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ALS fears are driving me nuts.
« on: August 21, 2014, 08:10:28 PM »
First let me tell you a little about myself.  I've diagnosed myself with colon cancer, ankylosing spondylitis, ms, heart issues and now ALS.  2-3 years ago I started having dizziness for no apparent reason, I know attribute it to spending too much time on the computer, however before I understood that I googled dizziness symptoms and found information about MS.  After that I "felt" that I was walking funny yet nobody ever pointed it out.  I feel that my legs could just collapse at any minute yet they never did.  I had pins and needles and numbness and twitching.  For the record I also have a L5 S1 disc herniation as well as an L4 mild bulge.  Those symptoms for the most part went away for around 2 years until this may.  I started running again and the symptoms without the dizziness returned.  So I figured relapsing remitting MS, until one day and it lasted for one day only right after my first bench press workout in a while my left pec started twitching for about half a day.  I looked up info on it and come across the Steve Gleason ALS story and when I read how he twitched I got a sudden hot flash and started to panic.  Now both of my calves twitch only a rest, when I use them they stop.  My right quad twitches a little and so does my left hamstring.  I went to my primary care Dr. And he proscribed me anxiety mess after his exam.  I can walk on my toes, and my heels.  I can hop up several flights of stairs on my toes.  I can do one legged squats and stand on one foot on my tip toes for over 30 seconds each.  I can still jump and touch 10 ft without getting a run at it and I can bike 20 miles and still run a 6 minute mile.  Is this all in my head as it usually is?  Need reassurance.
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Offline NytViolet

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Re: ALS fears are driving me nuts.
« Reply #1 on: August 21, 2014, 09:55:26 PM »
NO WAY NO HOW do you have als.  Do you know that about 60% of the population twitches?  Als is not about feeling-- it's about failing.  An als patient could not hop up several flights of stairs, let alone on tgeir toes!!  You should be careful, because many people who fear this dx test themselves to the point of exhaustion, which scares them more.  I've had twitching for 17 YEARS, and it's just part of your physical makeup.  If they bother you, have vitamin levels checked.  God bless!
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline Slangevar

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Re: ALS fears are driving me nuts.
« Reply #2 on: August 22, 2014, 12:06:19 AM »
When I was exercising regularly, my muscles would always twitch. They're minor spasms following use. People who get diagnosed with ALS rarely notice the twitches... they go in because one or more of their extremities become weak. And not just a perceived weakness - all of a sudden, they have trouble buttoning a shirt or getting out of a chair. You're fine - just stop watching ALS bucket challenge videos.
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Offline Sivils1

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Re: ALS fears are driving me nuts.
« Reply #3 on: August 22, 2014, 08:47:41 AM »
Thanks for the replies, it's very helpful to know that there are people out there like me and that I am not alone. Yeah I've noticed that most of this perceived weakness has to be coming from exercise fatigue.  I really didn't gradually increase my output.  I went from one day being lady and not running and riding on a daily basis to running 5-6 miles a day and riding 20, on top of all the one legged squats and other test.  The logical side of me needs to take over and understand that I can recover or just jump in with both feet like I used to in my teens or early 20s.  At 33, while not old it's still going to take a little longer to recover vs when I ran high school track and cross country.
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Offline NytViolet

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Re: ALS fears are driving me nuts.
« Reply #4 on: August 26, 2014, 02:07:25 AM »
You're 100% right, and it's worse after 40.  I would strongly urge you to visit a forum called About BFS.  There are over 5,000 members---all have twitching.  You're fine.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

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