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-   -   Please Help! (https://www.neurotalk.org/als/3795-please-help.html)

lisag 11-02-2006 04:06 PM

Tony ,,this will be my final response on this thread...

But, No ALS is not weakness , twitching and atrophy ...it is so much more... ALS is this...

http://www.wfnals.org/guidelines/199...98criteria.htm

Do you realize how much my husband and others here would "love " to be in your shoes...just to have a "qualified " doctor tell them they don't have ALS....it is something treatable ..or benign...or anxiety..
But, they can't ...why...because some can't breathe, some can't talk, some can't move....and there is nothing anyone can do except cope with the disease..and yet you are having a " crisis " over the thought of it and people are trying to comfort you... when a doctor has told you that what you suffer from is anxiety and "benign" fasicualation syndromes...seems backwards doesn't it...
No matter what we post , no matter what any doctor says, no matter what any test says...nothing is sinking in..it the fear that is out of control...and I posted the link to an anxiety forum in hopes that you would find help there,,,Lisa

Alison P 11-02-2006 04:09 PM

Tony,
Let it go....you are fine. Lisa's last post says it all.
Alison

arrigoar 11-02-2006 04:10 PM

One more thought Lisa...

And I whole heartedly appreciate your input. Even though my neuro says BFS and no ALS, he is saying that without my EMG results yet. He says he is 99% sure I don't have ALS.

I know that the EMG is the gold standard in dx'ing ALS...but can I trust his words in the absence of the EMG...until I get the EMG done next Thursday.

Thank you for your support,

Tony

Alison P 11-02-2006 04:23 PM

Tony,
Let it go....you are fine. Lisa's last post says it all.
Alison

arrigoar 11-02-2006 04:29 PM

Lisa,

If you get a chance...please read and respond to my previous post.

Thank you so much,

Tony

Alison P 11-02-2006 04:41 PM

Tony,
She has responded....we all have responded. Trust your neurologist and GP. You are fine.
Alison

Wayne 11-02-2006 04:59 PM

Bummer for you in that the "gold standard" is not an absolute positive or negative either. An EMG is a signpost. A positive points towards ALS. A negative points towards not ALS. But it only points. It doesn't say with absolute certainty one way or the other. Its not as simple as 2 + 2 = 4. Many patients who are dx with ALS have multiple EMGs before they get the "final diagnosis".

Better get use to it because that is how life works. You don't get certainties. You don't get absolute answers. You get problems and how you deal with them is your job. Good thing that you don't have ALS because it looks like to me that you would handle it worse than most who do get it and even the average person usually doesn't handle it well, at least not at first. All you have now is your own fears and its freaking you out, causing you to try to get comfort from people who ARE in really bad shape, at least physically. It would be funny for its absurdity except that ALS just isn't funny. Good luck.

Thelma 11-02-2006 05:59 PM

No matter what anyone says it is apparant that it is Lisa he wants to respond and so I anticipate without her responses this conversation will fade away.

Sorry guys lol

DaveWv 11-02-2006 06:50 PM

Quote:

Originally Posted by Thelma (Post 33870)
No matter what anyone says it is apparant that it is Lisa he wants to respond and so I anticipate without her responses this conversation will fade away.

Sorry guys lol

You promise?

John 11-02-2006 09:19 PM

Did anybody else notice that this thread about someone's neurosis which has absolutly nothing to do with ALS has generated more views than any other thread ever on this site. What does this mean?


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