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billyd

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I am sorry to vent here but there is some comfort in sharing thoughts with those dealing with this search for the diagnostic truth. I do not have a diagnosed yet and hope that it may be something treatable but I know how I feel. I have been on this quest for only three months with the frightening symptoms and subsequent trip to a hospital for the myriad of tests that they subject you to with suspician of neuro muscular involvement. For me the anxiety is all consuming, I don't sleep or eat properly with all the twitching a constant reminder of something gone wrong. Having trouble with the anti-depression med. I have not felt well at all since this started and am having difficulties at work. My pcp recommends disability. My next neuro apointment is not until December 17th and I don't know what I am hoping for there. What ever I have has come on and progressed very rapidly. How do you cope with all this, I'am not doing a very god job.
 

Blizna

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Hi,
do you have other symptoms except twitching? Weakness, atrophy..?

I was in the same situation, I fell bad and had twitching..I found out ALS on the net and entered to the hell. It was 5 months ago.

Now my twitches are not so frequent and after 5 months Im still with the same strenght so Im not so scared any more. But still scared a bit.

My advice is threat the anxiety, no matter how. I suggest Klonozepam (Klonopin?) that worked for me and some of my friends with BFS (benign fasciculation syndrome). Its addictive and its ironic, but withdrawl of this med can cause twitching :) I was on it for 3 months and now Im taking anti-depressants.
 

billyd

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Learn about ALS
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US
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New Jersey
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Dennisville
Symptoms

I have cramping in both calves, and twitches not only in feet but hamstrings and both biceps and a few other places. They are not constant but come and go daily. I have no tongue atrophy or abnormalities there (according to neuro) but some facial muscle tremor when forcing expressions etc. Some dysphagia in the tonsil area but no choking. All tests so far were negative including spinal etc. NCV and emg was negative on two extremeties. Starting the anti depressant tonight. Hoping at least for a few hours sleep.
 

Blizna

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Hey, its EXACTLY what I have! Facial tremour - when I smile slightly, my corners of mouth start to shake pretty nice.
Cramps in calves so normal even for healthy people.
I twitch in a few places too (shoulders, legs..) and my twitching also come and go. Thats not typical for ALS. I have negative EMG too.
Probably we have the same disorder but it really doesnt look like ALS. How do you have twitching?
 

billyd

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Oct 11, 2007
Messages
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Reason
Learn about ALS
Country
US
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New Jersey
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Dennisville
My twitching started in left toes, was constant for awhile then disappeared. Now occurs in diffuse places but typically front of top of legs and bicep areas. Sometimes on the left sometimes right. EMG of right upper and lower extremeties all were normal. I have to go back for the left side study on the 30th. Was feeling fairly good given the results when chin tremors started. I also think my tongue has similar tremors now.
 
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