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Danielson

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Learn about ALS
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Illinois
These are some of the things I've read that have put my mind at ease.....I'm sorry I didn't get the name of the person(s) who said them, but it is so reassuring, I thought I would post it.

If your neuro found something wrong in the NCV, that definitely points away from ALS and towards neuropathy.

ALS "fasciculations" are little teeny micro ripples in a small little area, and they are not random wide around your body. They follow a path of destruction. If you get ALS in your thumb, your twitches will start in your thumb and work their way up your arm as the disease migrates up that arm, leaving a completely weak and useless arm in its wake. That is nothing like BFS, not even remotely.

If you were twitching and you had a clean EMG, you don't have ALS, period. It WILL show up on the EMG, even if you weren't twitching at the time of the EMG and even if he tested you in a different spot from where you normally twitch, it would have still shown-up.

These statements give me great comfort.
 
Just curious but why do you get comfort in this? My NCV is fine, EMG's show acute and chronic nerve denervation, fasiculations rampant from head to toe even in my digestive tract, face, skull muscles. Major muscle loss head to toe. I know it isn't ALS even though I won't live through it.

The point is one can worry incessantly in fear of one thing when a dozen others may hasten the exit from this world.
 
I find it comforting because it pretty much tells me that I don't have ALS. I know I could get sick with many other diseases, but hopefully this is one I can put behind me.
You say "I know it isn't ALS even though I won't live through it." do you have a diagnosis?
 
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