Bulbar symptoms?

[sukilou]

Good morning to all! (It's still barely morning here in Oregon--I slept late today!) About 2 weeks ago I posted with my story and asking about rate of progression. At that time I had not noticed any bulbar symptoms. But that has changed recently. Last week my lower lip started twitching. It's not constant but happens throughout the day. Also some slight drooling and an occasional slurred word. This week I experienced my first jaw spasm while out to lunch with friends. It happened four times and I bit my tongue bloody once. I managed to cover it up in front of my friends. They are very close friends and know about my diagnosed of ALS, but I was embarrassed to show them. I'm still trying to get used to my diagnosed. I think I'm in the denial/depression stage, and feel self conscious in public with my walker and awkwardness.

Anyway, my question is: What are bulbar UMN symptoms and what are LMN bulbar symptoms? Guess that's actually 2 questions.:smile: I've done a search here, but haven't found any definitive answer. Hoping for some imput! Lonna

 

[rose]

Lonna, It was probably inevitable that you have some bulbar symptoms, It may not turn out to be a big deal, at least for a while. I understand that I'm considered bulbar onset, but I've had a few minor limb "hints" almost from the start, or what I consider to be the start,...

Here is an incomplete summary....

UMN with bulbar area is
Hyper gag reflex
Emotional Lability
slow moving, retracted tongue, weak tongue
excess/.decreased saliva (this I know is associated with central 7th cranial nerve)

Slowed speech is UMN.

You can have lip weakness with atrophy, and it still be UMN, it doesn't have to be lower. I have this, and although an EMG needle was only inserted in two places, it was normal for the lip, and my atrophy and weakness is easily noticed (sigh) so, that would be UMN.
The spasms in the face would be UMN too.


LMN is fasciculations in the tongue, and I guess the fasciculations anywhere in the bulbar region. Atrophy of the tongue would be LMN too...

reduced, absent gag reflex is LMN

This is a partial incomplete list that I only know because of my own personal experience. I'm sure there are others that will be able to help you with this more.

I understand about you feeling embarrassed (although of course you shouldn't) its a normal reaction. If you find that the drool keeps happening because of excess saliva, there are medications that can be given to help with this at least.

Just know you've got company on here that completely understands. We may not always have answers, but we've got empathy! (hugs!)

 

[sukilou]

Thanks, Rose, for the info. You have had a lot of experience with bulbar symptoms and problems, and I value your opinion.

I'm guessing that most of my recent bulbar sx are UMN, with maybe the exception of the lip twitches. My EMG was clean on the 2 tongue sites which were tested. My neuro put the needle in on the outside of my throat. I thought that was interesting, and I hardly felt anything. Nov 10 is my appt at the ALS Clinic and I'm sure that I will get more info then.

And thanks for the words of encouragement and hugs--can't have too many hugs!:smile:

 

[rose]

Lonna, you've got a great attitude, and the more you learn, I think the more confidant you will be that you can face whatever develops. Its the not knowing, the "now where did this come from!" that seems to throw me off balance.

I've heard that sometimes the tongue is tested through the outside of the throat. That is how the EMG's are done with my vocal cord muscles. She gets the needle in, then moves it to the 4 different muscles. This actually is not fun. (no kidding, right?)


Hey, we've got appointments on the same day I go back down for some pulmonary tests, plus see my neuro and the pulmonologistt that works with the ALS clinic on the 10th.


take care,