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Danny-

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Hello,

I have read tons of stuff regarding ALS,and i was wondering regarding the bulbar symptoms:is there a fixed,let't say,order in which the symptoms appear?for example is slurred speech always the first symptom to appear?or swallowing/choking difficulties can appear as the first symptom,even before the slurring in speech?can we at least say with certainty that in bulbar onset symptoms of ALS,slurred speech comes usually first and swallowing problems come second?or there is no fixed line in which they appear?

Thanks for your answers.
 

Katie C

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Nope. Sorry. Glen over several years had throat clearing, then choking episodes. He didn't slur his speech until after he'd been diagnosed. If you're looking for absolutes with this disease you're just not going to find them.
 

samsmom

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My dad had hoarseness for about a year and then the slurring began followed by swallowing issues.
 

Nighthawk

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Even two (2) ALS Patients (PALS) don't start with similar Bulbar problems.

Mine started slurring words because...it was my tongue that started with weakness followed by fasciculations and atrophy, therefore forming words and phrases became increasingly difficult.
Choking on liquids and some solid food (crumbly foods and salty foods) showed shortly thereafter.

But, you are not going to find two PALS with Bulbar-onset starting with the same exact symptoms.
Don't forget that PALS are just like snowflakes.


Carlos
 

malcolm b

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I'm a newbie, but from all i read on this disease it is individual in nature and progress. I have bulbar onset, diagnosed 5-23-13, and in my case the onset was masked by a severe "bronchitis" lasting 4 to 6 weeks. Voice abnormal, choking abnormal. Voice got progressively weaker over 2-3 months---gone within 5 months. Tolerance for food has remained about the same since January.
This is part of what makes this disease so devilishly difficult to diagnose. Oh, I left out a finding of paralyzed RH diaphragm back in early January, found as a result of a dyspnea complaint to my internist. He thought it would resolve on its own.
The most that can be said for the bulbar onset case is that it involves some combination of speech, swallowing and breathing difficulties. Highly individualized...........


malcolm b
 

Nighthawk

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@malcolm b:

Have you scheduled getting the PEG-tube procedure done for your swallowing issues and a DPS for your diaphragm down the road?
 

Greg8474

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My dad was slurring speach first,he was still able to eat for about a year then foods had to be thinned
 

TGB1

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My mom's speech was slurred for about 2 1/2 years before the swallowing issues began and she had to eat soft foods.
 

Al fox

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I had a spastic type coough for a few years being diagnosed in June 2011. Not sure if the caugh was related or not. My initial symptoms were neck weakness/pain and slightly slurred speech. I'm lucky due to the fact that I can still communicate with others with my voice, my neck pain is overwhelming though.
 

Nighthawk

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I had a spastic type coough for a few years being diagnosed in June 2011. Not sure if the caugh was related or not. My initial symptoms were neck weakness/pain and slightly slurred speech. I'm lucky due to the fact that I can still communicate with others with my voice, my neck pain is overwhelming though.


Perhaps, your neck muscles are getting weaker.

Have you asked about a neck brace at the ALS Clinic where you attend to?
 

Janie H

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I started with choking on foods and liquids, then slurred speach ( not bad and not always) I thought I needed a throat doctor, after a swallow test I was sent to a neurologist who saw my tongue jumping all over the place, I didn't even feel it, now fasciculations all over, having trouble coughing, I cough until it turns into a barking sound, scary not to be able to cough. Throat feels weak, can't hit my inhaler as hard as I used to. I go back to the ALS clinic in a week or so.
 

pinkmoon11

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Hi Danny... I was diagnosed with ALS in December 2012. Starting in January 2012, I noticed that my voice would shake while I was talking with customers on the phone. (I was a service rep.) Along with that, I found myself choking on liquids. In addition, it seemed as if my breathing was compromised. Currently, I have a great deal of trouble speaking, slurring and can't form words. I now have an Ipad with "Verbally" on it. My chewing and swallowing is difficult. Breathing worse. I use a bipap. And next Wednesday, scheduled for a feeding tube insert. ...so I have to agree with everyone that the bulbar symptoms do not present in the same order for every ALS person. Take care.
 

Al fox

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Your correct my sternoclado mastoid muscles are pretty much shot. I wear customized soft collar for support and take some pain killers daily. Thanks for the suggestion.
 
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