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greg175csp

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PALS
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5/12/2006
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US
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WV
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Harpers Ferry
I am asking this question out of sheer curiosity. I am not pointing any fingers, nor am I trying to start anything by asking. Please do not read anything more into the discussion than the question I am about to ask itself.

Here goes...

Why do many people immediately jump to the most frightening conclusion they can think of when it comes to their health? Truly, it's not just this forum, but all I've parused have similar discussions. Things like, "Oh my gosh! My hand has been numb for 2 weeks. I think I have ALS! Do I?" or things like, "My right arm shakes, I must have Parkinson's!"

The biggest culprit I see is Fasciculations.
Fasciculations (muscle twitches) can be caused by so many things. Anything from stress to caffeine poisoning, exercise to diet deficiency, can cause fascics. Yet I see so many posts asking about twitches where no other symptom is mentioned or had, and each one asks, "Do I have (whatever horrible disease)?

What Gives?

Please, let's have an open discussion on this topic.
 

ZenArcher

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Joined
Feb 22, 2007
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672
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PALS
Diagnosis
02/2007
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US
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PA
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McEwensville
In my personal opinion there are a few reasons for this. It starts with a search of the Internet for muscle twitching which leads to this new word fasciculations. Searching for that brings up this whole new scary world of which ALS is a possible cause. At that point fear kicks in and because fear feeds itself none of the other pertinent information matters. Now it becomes a horrible game of "what-if".

In my case I looked for every other possibility I could and was still voting for the pinched nerve up until the completion of the first EMG. In this age of instant gratification and a wealth of knowledge available through the Internet we need to check the sources and research fully before making assumptions. We as a species have a tendency to jump to conclusions and will more than likely continue to do so. Add to that the fact that this board is a friendly environment with kind hearted people who have proven a willingness to talk and more importantly reassure and the questions are bound to be asked.

There's my two cents worth :)
 

Midnight

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Hi there,

When you have muscle fasciculations, it is so "in your face" (at least mine are) that you don't stop thinking and looking at them, especially if they are around the clock. So, if you eventually do what most people do, you "google" enough to learn about fasciculations and the fact that ALS is usually connected to this particular symptom. Obviously one can have twitches without ALS, but it is my understanding that people with ALS generally DO have twitches. I have not ever been on another forum, but I have seen how this forum GENTLY and compassionately weeds people that are only having "non ALS" symptoms.

When you start having symptoms that make you feel like your body is falling apart right under you, it is scary. The fear of the unknown (especially since there is no test for ALS) and coming face to face with ones own mortality pushes you to search for the answer, hopefully to rule it out. Especially since ALS is often not diagnosed until it has progressed enough to send you to many specialists.

I hope this helps, but again, I do believe the people that monitor this forum GENTLY and COMPASSIONATELY send those that should go...on their way.
 

liz

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Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
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US
State
NY
City
Albany
I minimized everything until the symptoms were so glaringly obvious that I could have been diagnosed by a monkey. I didn't seek medical attention until almost a year after problems started. When MND was first mentioned as a possibility to me a year prior to my final diagnosis, I thought that was so far-fetched that I dismissed it.

I'm not saying everyone should do what I did. Only that not everyone jumps straight to the worst conclusion. Why the different reactions? Temperment? External influences? That's for someone wiser than me to figure out.
 

greg175csp

Member
Joined
Sep 22, 2007
Messages
26
Reason
PALS
Diagnosis
5/12/2006
Country
US
State
WV
City
Harpers Ferry
Thanks for the replies and for seeing I'm wanting to discuss why this occurrs.

I agree that this forum is great in that its members work hard to gently guide people in the right direction for knowledge. I also understand the FUD that occurrs while trying to find out what is going on with one's body.

My personal experiences bring me more in line with Liz's way of thinking. I looked up fasciculations, got all the information I could and as the tests eliminated choices, I'd move to the next, "least" of evils. I just want to better understand the other way of thinking. Maybe even be helpful to someone else along the way :)
 

CindyM

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Learn about ALS
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Last year I was attending a conference with my boss. It was in the spring, in the mountains of New England, and the black flies were everywhere! I didn’t even see them- I had already collapsed at work and my local docs were showing me where I was fasciculating and saying my symptoms were consistent with ALS. I didn’t know what it was! Had to come here to learn what everybody was talking about. But at the conference with the black flies biting us like we were just so much cheesecake, I didn’t know at the time what my symptoms pointed to. I only knew suddenly I could not get around as easy as I once did. That was when my boss noticed several small bites on her arm. She immediately went into panic mode. She actually said she expected to get some terrible disease from those bites. (I suppose she meant Lyme.)

So the question remains: is it temperament? Experience? (Regarding bug bites, I’d been a camper for years. As far as losing mobility, I was visiting a nursing home daily where I saw lots of folks in wheel chairs.) Maybe it is also the support from our families. My boss lives alone. Nobody ever tells her she is over the top with anxiety, whereas my own family is quick to put a lid on my worries.

I keep going back to the old serenity prayer. Grant me the serenity to accept the things I cannot change; courage to change the things I can, and the wisdom to know the difference! Cindy
 
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