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grgizi121

Member
Joined
May 13, 2013
Messages
21
Reason
CALS
Diagnosis
05/2013
Country
UK
City
Birmingham
Hello
I am hoping for some help/advice please.
To cut a very long story short my husband was diagnosed May13 with limb onset. He has been doing really well apart from his reaction to riluzole which we also assumed was the cause of his gagging and nausea because he had an elevated liver function.
However his liver function is improving but the gagging is getting worse particular when he is tired.
I know it probably sounds ridiculous but I didn't consider this could be the Mnd until it hit me today!
Is this a sign of bulbar symptoms? I keep reading things that seem to contradict each other. I've read bulbar onset results in reduced gag reflex?
Any advice greatly appreciated
Karen x
 
I can't answer definitively for others but I have bulbar and my gag reflex is increased. If I open my mouth beyond a certain point, say wide enough for the docs to look in, I immediately start gagging. The same is true for brushing my teeth, everything is an unpleasant adventure
 
Karen,
I am bulbar onset and, initially, my gag reflex went into hyper drive. It was actually a little concerning at first, but in the last 6 months the reflex has subsided considerably. I don't know why (I did nothing differently), but I hope the same will be true for your husband.

Not trying to play doctor here (although I did stay in a Holiday Inn Express once!), but are you referring to gagging or choking? I still have trouble with choking (liquids mostly) but not so much with the gag reflex any longer.
 
>everything is an unpleasant adventure

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could not have said it better!


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Max - Tuesday, July 15, 2014 11:15:57 AM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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Hi Karen,

yes things do seem to contradict because the disease is so complex.

When 'bulbar' issues start there can be differences because 'bulbar' is a region of the brain. I have found that there can still then be a fair amount of variation in just what parts of the tongue/throat start wasting or being affected first.

For my husband his palate dropped and he had a post nasal drip in the early stages. This made his slightly slurred speech sound hypernasal. And that low palate caused all kinds of gagging issues.

Can you get a speech pathologist to check this out as they are specialised in this area and can probably help the most in understanding what is going on there.
 
I was diagnosed in June 2013 and my gag reflex was already gone, might be the reason I get choked so easily. I've noticed lately that my tongue will not lift up( like touching my upper teeth) cramps when I choke and curls under.
Janie
 
>but are you referring to gagging or choking? I still have trouble with choking (liquids mostly) but not so much with the gag reflex any longer.

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Ditto that! choking, swallowing ropy saliva, not gagging; however, sometimes in-breathing spasms -- very unpleasant!


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Max - Wednesday, July 16, 2014 5:47:46 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Thank you for the replies

I call it gagging not sure if it's the wrong term but it's as if he has just stuck his fingers down the back of his throat. Sorry, best way I can think to describe it! Even strong smells seem to be setting him off with it at the moment

He has also been struggling to sleep lately too as he keeps having nightmares that he is struggling to breath, so I am unsure whether he is just fretting over it all or there is a problem starting there! His arms and shoulder muscles have twitched since before diagnosis but now his chest muscles are twitching too. Another stupid question but will this effect his lungs shortly?! Anyone had chest muscle twitching without breathing issues following shortly?

I do struggle with not knowing what is coming next 😞

Manage to stay quite positive with his slow progression most of the time but then have sudden panic attacks about what is next and worry I am almost too relax and wasting time!

Thanks for listening and any advice xx
 
Karen,
Is the gagging due to mucus or saliva that sticks in his throat? Strong smells/dry air can increase the urge to cough, and then he could feel extra-nauseated or breathless if things are stuck. Hot drinks sipped, papaya tablets, a suction machine, lozenges and humidification are all things to try.

If he has nightmares about breathlessness, he is probably having breathing difficulty and could benefit from BiPAP, which your consultant can prescribe. I would not delay. Using that at night can even help him feel stronger in trying to "cough" the secretions during the day.
You're not going to be able to connect twitching with much else reliably so I wouldn't try.
 
I agree and would see to having his breathing checked over.

The fasciculations for us were indicative, but didn't mean something was going to give out immediately. Chris had his first ones in his upper arms, then over the back of his shoulders, then to his fingers. He was bulbar onset. His arms were the next to start to fail.

Then around the ribs started. His breathing was compromised but he was still breathing well.

Finally started in the legs and his legs were nearly completely gone when he passed, he was just barely standing for some transfers, but was hoist for some too.

But others can tell you a very different order and time line. It's so frustrating I know!

I think that having his breathing checked, so it can be monitored will tell you what your individual progress is, but more as it happens and looking back than in advance.

If his breathing is compromised then he can discuss and decide on what, if anything, he wishes to do about it. But if he is thinking of a pacemaker or bipap, all the evidence shows that doing it early is the way to go.
 
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