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shopathonic

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After nearly a month of nonstop twitching in my calves and sporadic twtiching elsewhere in my body (including a tongue tremor that the neuro noticed), today I saw a neurologist who specializes in neuromuscular diseases. He did all the standard strength tests and neuro-exam procedures and found no weakness or atrophy anywhere. He said that he would be glad to schedule testing--EMG, etc.--for reassurance purposes. So my question is this, especially to PALS: I've noticed that some of you have said that twitching was your first symptom and preceded any cramping or atrophying; if so, did you have your first EMG before the onset of additional symptoms, and, if so, was it negative or positive? Also, how many had an initially negative EMG only to have a persistence or worsening of symptoms and then have a later EMG that was positive? Or, if your first EMG is negative, does that pretty much mean that you're home free?

Thanks to anyone who can share his/her experiences.

Jeff
 

ltr

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Jeff - I know you are looking for pals experiences, but I will tell you mine since I have a neuromuscular disease. My first emg was a week after symptoms started (weakness of legs, tremors and twitching) and it was negative. Nine months later my second emg (2 needle stickes and a lot of NCV) was negative. My third emg, last week was highly positive, and this is after I have started treatment for myopathy. The reasons for this are 1) emg's done too early may not detect problems. 2) some neuromuscular diseases can be scattered throughout your body and only a good emg'er will pick it up. The emg can always change, but the doc last week told me it's more usual to find als on emg in a patient who had no idea anything was going on. Good luck.
 

shopathonic

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ltr--
Thanks for your reply. So it does seem that an EMG can be negative in someone who harbors some variant of a neuromuscular disease, although eventually--even after a long interval--the test will probably turn out positive. So an earlier negative is not necessarily a definitive result, depending on the future course of symptoms.

I was intrigued by this comment from your doctor: "it's more usual to find als on emg in a patient who had no idea anything was going on." I wonder if this is just happenstance, or if there is a good reason for this tendency.

Thanks again,
Jeff
 

Al

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I had weakness and cramping first then the fascic's. First NCV and EMG said positive for ALS 10-11 months after fasic's started.
AL.
 

shopathonic

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Thanks for this information, Al.

Best,
Jeff
 
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