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Author Topic: ALS fear still... =(  (Read 196 times)

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Offline Lau8911

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ALS fear still... =(
« on: August 23, 2014, 12:10:39 PM »
In all honesty, is it something you just have to wait out and see what happens..after a couple months of different symptoms..?

I got my left side only EMG about 2 and a half weeks ago and the neuro said I was fine, but I am terrified I still have this. I had two neuros basically say I don't have it and just said it was all due to stress, but I have read so many different things on the internet I don't know what to think anymore.

My first neuro who actually worked with different ALS patients, said that you can't have symptoms months before leading up to a diagnoses of ALS (since I first came to him after only feeling weird symptoms for about 2-3 weeks), then I will watch documentaries of people in their 20's like myself and read things and people will say they felt twitches or a stiff muslces months or even a year before they were actually diagnosed.

I have been currently feeling new symptoms after my first EMG. These symptoms thought have been progressing in my right arm for about two and a half months. I have 24/7 cramping in my right hand, forearm, bicep, shoulder and back. I also have twitches all over my upper right side as well that hurt, because it's always cramped. I rarely have twitches anywhere else. My arm also feels weaker and more shaky, compared to my left arm. I also have stiffness and pain in right knee.

I had heard that ALS usually starts with one limb then spreads. That also scares me too and I have had a lot of blood work done, mri's, and a spinal tap to see if it was something else. Anyone have any advice? Thank you.
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Offline Lau8911

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Re: ALS fear still... =(
« Reply #1 on: August 23, 2014, 12:12:27 PM »
Also, this fear popped up way before the ice bucket challenge. I just looked up twitching and cramping in forearm and ALS was the first thing that popped up on the internet.
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Offline thenomnomnomicon

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Re: ALS fear still... =(
« Reply #2 on: August 23, 2014, 04:00:32 PM »
Don't underestimate the physical toll of stress on a body. There seems a divide between what 'cramping' means to a person with HA and 'cramping' to the rest of the population. Unless your arm is visually tightening and into a flexed or immobile position, it isn't the kind of cramping preceding ALS.
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Offline Lau8911

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Re: ALS fear still... =(
« Reply #3 on: August 23, 2014, 05:17:57 PM »
Thank you. Yeah I guess I am trying to come to the conclusion it is mainly anxiety, just feel the cramping in arm, shoulder, back and neck on the same side 24/7 along with twitches and that tends to make me worry even more.
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Offline Slangevar

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Re: ALS fear still... =(
« Reply #4 on: August 23, 2014, 05:40:04 PM »
Why in the h*ll are you watching documentaries about people with ALS?  Are you CRAZY?!  That's like an active alcoholic going to a wine tasting!

Rule #1 for people with active HA who are not doing some kind of cognitive behavioral therapy: Do not watch or read anything about people with tragic diseases. No movies (fictional or otherwise), videos, magazine articles, ***** posts or books.
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Offline Lau8911

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Re: ALS fear still... =(
« Reply #5 on: August 23, 2014, 07:25:12 PM »
Yeah very true. It does make me more anxious. I guess I was trying to educate myself on the matter, but I might have educated myself too much..and it's just making me more anxious and not as willing to just listen to my neuro. Thanks for the feedback.
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Offline Slangevar

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Re: ALS fear still... =(
« Reply #6 on: August 23, 2014, 08:10:19 PM »
I hear you on the education, but I think it can be risky for people in HA. I think it's only helpful in two cases: 1) when we've actually been diagnosed with something, and 2) as a cognitive behavioral tool.  But the latter doesn't involve researching your worst fear - it involves researching possible benign causes for your symptoms.

For example, if my legs start twitching and I look up "leg twitching," I'm going to see ALS and MS. But what else could be causing it?  Maybe the two miles I just walked?  A vitamin deficiency?  Dehydration?  Anxiety? 

So I look up "leg twitching" and things like "exercise," "dehydration," "anxiety" and "vitamin deficiency." And low and behold all of those can cause leg twitches, and are much more common than ALS.
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