Old 11-26-2012, 03:25 PM #1 (permalink)
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Default muscle twitching

Hi I'm new to this ; beginning in June my muscles have begun to twitch 24/7. I also have extreme weakness in my abb area making it difficult to breath. I have no other symptoms of ALS that i read about. Had an EMG / MRI / blood work and the Neurologist said i have ALS. I have been refered to Vanderbuilt in Nashville but thats not until January. Is the Muscle twitching typical ? i guess im scarred waiting on the next appointment ..any advice will help.
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Old 11-26-2012, 04:11 PM #2 (permalink)
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Default Re: muscle twitching

So sorry that your EMG and clinical examination has pointed to ALS. Muscle fasciculations are typical in muscles affected by ALS, but can be found in muscles of some people, and for them it's normal. But, they will have a normal EMG and have no associated weakness.

I do hope they find an alternative diagnosis. Best wishes.
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Old 11-26-2012, 04:11 PM #3 (permalink)
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Default Re: muscle twitching

Sorry Parker...answer went to moderation for some reason?
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Old 11-27-2012, 08:58 AM #4 (permalink)
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Default Re: muscle twitching

Thanks for the reply .
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Old 11-28-2012, 07:09 PM #5 (permalink)
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Default Re: muscle twitching

It's always a good idea to get a second opinion. I'd suggest a neuromuscular specialist. The ALS association lists them for each state. Sometimes, they can even get you into a center quicker than you can yourself (the ALS association got me in to see one very quickly based on a neurosurgeon saying he thought I had ALS)

Remember, it can only be ALS when it can't be anything else. If it IS ALS, there are new clinical trials and new things on the horizon--but it would be unusual for ALS to being in the abdominal region (it normally begins with bulbar (tongue/swallowing) or distally--hands and feet.

I'm not trying to give you false hope...but I'd want that second opinion--and I"d want to go to a specialist that can get me into trials if at all possible.

If you find that you do in fact have ALS, you will find all kinds of support here. There are a great group of folks here that will help however we can. If you're a Vet--there are all kinds of benefits there as well.

You're in GA--is there nowhere closer than TN? What about Mayo in Jax?
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