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Author Topic: ALS Fears  (Read 169 times)

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Offline Humean

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ALS Fears
« on: May 10, 2014, 09:13:21 PM »

I have lurked here for some time, but I wanted to talk I suppose.

I've been struggling with ALS fears for about two years now. It started at a stressful time in my life, when I was starting grad school, and I've been dealing with it since. I first noticed that I was twitching, and I was scared it was a brain tumor so I did the unforgivable thing and googled and saw ALS as a possibility. Since then I have been worried over my fingers and toes fairly constantly. After about six months, I started on Zoloft, which has helped tremendously(I can read books without staring at my fingers for hours on end!) but  I still feel worried. Especially now I worry about my foot, which seems to have become weaker, and my toes are, for a lack of a better word, squishy and asymmetrically so(one foot seems firmer and stronger than the other). I am terrified I am going to start falling down, and can't walk anywhere without being a little afraid. I know that the odds are dwindlingly small, as I am not even 25 and I've been worrying for two years, but I can't quite shake the fears. I figure that two years of strength testing on my fingers and toes have probably taken a toll, but it's still rough going sometimes. Has anyone else dealt with these kind of long term fears? Has anything helped a lot?

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Offline privilegedwhitekid

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Re: ALS Fears
« Reply #1 on: May 10, 2014, 09:56:47 PM »
this is sort of where i was a year ago, started with the twitching too. my ALS fear was so intense that it was actually debilitating. couldn't work, spent literally thousands of dollars on doctor appointments, sometimes i would go to the doctor several days in a row in a panic. i have seen many doctors, including highly experienced neurologists, and i can tell you with absolute certainty that the weakness is all in your head. our bodies aren't symmetrical, and the more you stare at it the more "abnormalities" you're going to find. i was sure i was doomed when one calve was bigger than the other, when one side of my tongue was bigger; i was sure it was atrophy when i noticed the 'dents' in my forearm, or the one in my left shoulder. but in reality it's nothing.

and after 2 years you would definitely have progressed substantially. you would almost certainly be in a wheelchair if not worse. but definitely not still up and around. stop testing yourself, and stay off google.

btw, i still twitch every day. i've just come to accept it as something my body does and now i've moved on to worrying about other horrible diseases  :spineyes:
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Offline Descent

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Re: ALS Fears
« Reply #2 on: May 11, 2014, 06:59:50 AM »
It might be worth it for you guys to get your vitamin levels, specifically D and B12, checked out. I've noticed worsening anxiety and twitching sensations over the past couple months, turns out I had a pretty bad Vitamin D deficiency. See? Us Hypo's like to fear the worst, when it's most likely anything but.

Also, from everything I've heard from people, twitching is always a late stage sign of ALS. It's usually seen when the nerves in the muscles are dying off. ALS tends to present with profound weakness or some other noticeable major difference in how your muscles are behaving.

Anxiety can easily cause twitching and perceived weakness. Rest easy, I think you're fine. But seriously, vitamin deficiencies? :P
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Online ShawnW

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Re: ALS Fears
« Reply #3 on: May 11, 2014, 09:04:07 AM »
It's case study rare for twitching to be an initial sign of ***.  Most experts believe that if someone complains of twitching first they would have abnormal findings on exam.  Meaning if you twitch yet have a normal exam for all practical purposes do not have ***.  At 2 years, you can safely say you are out of the woods.  Twitching is just twitching...without real weakness...cant button your shirt, cant stand on your toes, cant speak without's not ***.  Your worry is like saying...because I have a headache I have brain ca.  Twitching in the general population is VERY common...most people get it but few worry about it...less ever see a doctor about 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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