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Author Topic: How did you overcome your ALS fear?  (Read 363 times)

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Offline joycecaroll

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How did you overcome your ALS fear?
« on: May 19, 2014, 03:05:53 PM »
I'm still trying to overcome this fear of ALS but it isn't going to well. I can't shake the feeling and can't stop feeling sad/worried about my twitching.

Today I wen't to my doctor and he did som nerve testing (no emg, just a simpla neuro exam). He said he's not worried about ALS for me, bacause ALS twitches do not come and go. I'm not sure if I can believe him since I feel I've read about ALS patients who's twitches came and went.

I would like some tips on how to reassure my self and over come this fear? Anyone suceeded with this?
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Offline Rasalhauge

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Re: How did you overcome your ALS fear?
« Reply #1 on: May 19, 2014, 03:33:01 PM »
I'm still trying to overcome this fear of ALS but it isn't going to well. I can't shake the feeling and can't stop feeling sad/worried about my twitching.

Today I wen't to my doctor and he did som nerve testing (no emg, just a simpla neuro exam). He said he's not worried about ALS for me, bacause ALS twitches do not come and go. I'm not sure if I can believe him since I feel I've read about ALS patients who's twitches came and went.

I would like some tips on how to reassure my self and over come this fear? Anyone suceeded with this?

I think that CBT (Cognital bahavior Therapy) could be helpful in the case of ALS and other scary diseases without any actual symptoms of the disease itself, i.e. after thorough examination by a competent doctor. Iīm going to give it a go myself in just a few weeks time (hopefully). One could be so rude as to say that in the case of ALS you could just wait and see (others tell me that all the time), since it is a fairly agressive disease with a quite rapid progression many people say that if I actually had it then I would definitelly know for sure in just a couple of months (tops).

But I have to say, if twitching is your only symptom then youīre w/o a doubt not strucken by ALS. Twitching comes from muscles/nerves under atrophy, itīs not a first sign. If you do not experience actual clinical weakness or speech impairment then it most certainly isnīt ALS.

I have suspected (as in suspected by a neurologist) atrophy in my left arm/hand and is currently waiting for an EMG, and in my case this atrophy (and twitching) was acompanied by severe weakness and loss of function. Even so, Iīm trying not to jump to conclusions and try to convince myself that there could be more benign reasons behind it all. Thatīs one thing worth remembering too, ALS is a scary disease. BUT, there are literaly close to a hundred more plausible explanations for twitching and other ALS-related symptoms. When you hear hooves...
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“There is no greater sorrow than to recall in misery the time when we were happy.”

- Dante Alighieri

Offline ShawnW

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Re: How did you overcome your ALS fear?
« Reply #2 on: May 19, 2014, 03:56:46 PM »
I agree with CBT.  Time usually heals many sufferers from the fear of twitching.  Eventually they realize the docs were right.  But, we have a bigger issue and that is with HA.  If the ^&* fear goes away we will find a new one to replace it with.
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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 mollyfin

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Re: How did you overcome your ALS fear?
« Reply #3 on: May 19, 2014, 05:00:50 PM »
I don't specifically remember, but I'm wagering mine went away when I found another illness to worry about ;)  That said, if twitching is your only symptom, you don't have ALS. 
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Offline joycecaroll

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Re: How did you overcome your ALS fear?
« Reply #4 on: May 19, 2014, 05:10:19 PM »
Thank you so much for great feedback! Actually I'm starting CBT tomorrow! Hoping that will help.
Any own experince with CBG?

As far as twitching goes - do you know if the twitching in ALS can stop after just a few days, or is it supposed to be more consistant than that? Knowing for sure that it's not supposed to go away in such of a short time with ALS would really help.
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Offline NytViolet

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Re: How did you overcome your ALS fear?
« Reply #5 on: May 19, 2014, 05:14:58 PM »
I wasted over a YEAR convinced I had ALS.  I visited two separate neurologists for a total of 4 or 5 visits. Despite the doctors' reassurances, I continued to carefully monitor the strength in my limbs and every twitch sent me through the roof. TIME HEALS, and after a year of pure hell, I finally realized that I was not in a wheelchair or losing dexterity, and ALS was a phantom illness, all in my head.  I do not suggest you follow my path, because I spent a year in deep depression over what turned out to be NOTHING. Fasciculations are EXTREMELY common. There is Benign Fasiciulation Syndrome, stress, too much caffeine / sugar, (in my case fibromyalgia aggravated by stress), and general nerve impingement.  If you were once / are athletic and tend to have a good amount of muscle, you're more likely to have the twitches. To this day I even see them on the bottom of my feet (right at the arch). ALS moves quickly and usually begins in ONE part of the body.  Also, the twitches come AFTER you start to lose function and the muscles are atrophying. It also tends to be more common in older men (60+). A friend of our family had ALS... he was having distinct difficulty walking which progressed rapidly. A few months later he was in a wheelchair, and it was all over within about 9-12 months. My husband is an extremely healthy man, and we were watching basketball together on the sofa Sunday night. I suddenly noticed that he had some rippling fasciculations on his forearm. When I pointed it out, he said that he had been working in the yard earlier in the day, and was probably low on electrolytes, salt or potassium (that is how a normal person thinks). So please be kind to yourself and give your poor brain a rest - YOU DON'T HAVE ALS.   ;D
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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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