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jnuttall

New member
Joined
Dec 2, 2008
Messages
1
Reason
PALS
Diagnosis
10/2008
Country
US
State
Michigan
City
East Lansing
I was diagnosed with ALS 1 1/2 years ago with legs onset. I am now just beginning to slur a few words. Mostly S's. My Neuro doesn't think this has anything to do with my ALS yet, since he did not see signs of facibulations of the tongue or any atrophy of the tongue. But my thinking is that people who had bulbar onset often are not diagnosed since it is not advanced when they first are examined. I'm interested in knowing how speech problems started for other people and did you tongue show faciculations or atrophy at first or later. Thanks for any advice. Jim
 
hi jim.
i can not speak for those with bulbar onset but as i understand it its with problems with speech or swallowing that take them to a neuro.............what they find that early on i can not say.
there are a few here with bulbar onset who will be able to answer you.

why your neuro does not think its als related with your als diagnosed i can not say.
maybe it could be due to fatigue as that can happen or umn symptoms in the bulbar regions and the lmn symptoms have not developed yet.

i have pls nearly 11yrs now that started as leg onset yet i have had slurred speech on and off when very fatigued since the start,a few years ago i started with bulbar symptoms and noticed it was a little more ofton but now its getting to be daily.

it maybe that you will have to wait and see if it gets any worse then your neuro should evaluate you with a bulbar emg.

by the way my junior school headmaster's last name was nuttall,he gave me the slipper once for being naughty lol
 
Jim, welcome to the forum. I am a bulbar onset PALS and was diagnosed in January 2008. My first symptoms in July of 2007 were slurred words and because I am not in the habit of looking in my mouth that was all that I knew. My family doctor sent me for an MRI and to a neurologist. The first thing the neurologist did was what they all do, the usual arm and leg wrestling and reflex testing, all fine. It was when he saw my tongue and it's bag of worms wriggling (NOT TWITCHING) that he decided to refer me for further testing. So even though the first thing I noticed was occasional slurred speech there were visible things happening to my tongue and these were things that I did not feel. As far as tongue atrophy at the beginning, who knows? I wasn't able to lick my eyebrows then and now my tongue hardly moves at all. :shock::shock:

So you know, if your neuro says it is not related because he sees no fasciculations or atrophy then he is going to be right. Has anyone else noticed your slurring?
 
Jim, Welcome to the forum!

I am intrigued as to why your neurologist doesn't think your slurred speech is related to your ALS. I've read accounts of some folk getting an EMG that picked up fascics the patient didn't know he/she had.

Oh well, if the doctor says your slurred speech is not being caused by ALS, I'd be interested in knowing what is.
 
Jim,
My advice is voice bank! My husbands slurring came on slowly....meanwhile we were searching other diagnosis. I wish everyday that I coud hear my hubby's voice again. Please do this...be prepared. I am hoping that you keep your voice for a long long time!
Kelly
 
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