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dand_75

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Aug 11, 2007
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PALS
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Louisiana
Well GOD is still in the prayer answering business! I went for my appointment today and my emg and ncv test were totally clean! My neuro said there wasn't even the tiniest chance that I could have ALS so I am happy and I am gonna run with it. Now stop reading right now if you hear of symptoms and then automatically start having them. Here is what he told me. The tongue would twitch and move at rest inside your mouth with ALS. If you've ever seen an ALS tongue then you would know. It is NOT the quick jerking seen on small spots of the tongue when you stick it out or even at rest. Next, he said most neurologists have never even seen a case of ALS so when someone on here says they had a clean perfect emg then was later diagnosed with ALS the symptoms they were experiencing first were not in any way related to ALS OR their neuro misread the emg. He said that if you were experiencing extremely mild bulbar symptoms and stuck your right little toe the emg WOULD show it. He trained for months or years under some high up specialist in Houston, Tx doing nothing but studying ALS and doing emgs so I think he knows what he is talking about. His name is Dr. Benjamin Nguyen of Louisiana Neurology Specialists in Shreveport, La. He also said new research has shown that ALs is probably autoimmune related. He said he diagnoses a case of ALS at a rate of about 1 every 1-2 years so regardless what we may think reading these posts it IS a RARE disease. I now have two beautiful babies who need their daddy and I am gonna love and play with them like crazy. To all of you who have ALS or are a caregiver, I will pray for you. You are soldiers. To all who have clean emgs, have a freaking party man! Accept the Lord Jesus Christ and no matter what comes your way HE will take you by the hand and lead you through it! "If HE leads you to it, HE will get you through it!" I love you all. I will not be visiting the forums again unless something drastic changes, maybe not even then because I hear of a symptom that I don't even have and low and behold I get it too! I will not even be reading the replies to this post but please feel free to post replies all you want. Some of you will invariably not believe some things my doc said because you've had different experiences and that is OK. But he is a specialist on a rare disease so take it for what its worth.

One last thing, he also said that I am an "anxious" person and that anxiety causes, tingles, twitches, heaviness, sluggishness, etc..... of any body part we focus on. There's a shocker! Sorry the post is so long.

Dan
 

ltr

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Joined
Feb 11, 2007
Messages
691
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US
State
NY
Dan - even though you are not coming back to read this, I want to say that you gave some very good information from your doc. You asked some questions that were very important and best yet......you actually got good answers and explanations for some things!
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
Thanks Dan for a great post and a great report. Go play with those babies and have a great life! Cindy
 
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