Bulbar symptoms

[planningguy]

Thank you all for the updated information. Of all of the symptoms I am experiencing right now, these are the most frustrating to me. I tried to eat a salad yesterday and made a complete mess of things, but did ok with some french fries. I'm not choking, but the quick relief I used to get from liquid just doesn't seem to be there.

I have also noticed that even though I am a regular brusher and mouthwash user that my tongue is coated with white mucus, and that my mouth dries out really quickly.

Finally, I asked this in my other post but no one had heard of it. My nostrils seem to have flattened (my wife and coworkers have noticed) and no longer have their rounded shape. The end result is that I can cause them to close with a quick sniff (Not a hard sniff as I do realise that at least partially close when you do that :-D). My nose and the area around it almost feel like they are glued on. I wish I could find who made off with my nose as I was pretty partial to it.

Robert

 

[rose]

Rose:

I believe I suffer from both: spillage and occasional choking when swallowing liquids. I have also been concerned that what I have could be a form of pneumonia. I developed a cold about 3 weeks ago, but now I suspect that the origins of the cold could have been related to spillage and fluids accumulating in the lung tissue. Normally, I am able to kick a cold in a week, but my coughing and clearing of the throat continues even after 3 full weeks. I have also developed a sensation of wheezing as well. Thanks for your comments.

Why don't you just go to the doctor to be safe? There are specific antibiotics used for aspiration pneumonia and others used for "walking" pneumonia, bronchitis etc. My doctor could only find one that she was sure would work for both types, even though she was pretty sure it was aspiration as I'd not been sick with any sort of respiratory illness before hand. I kid you not, it wasn't even 5 hours after taking my first dose that I stopped aching. It took longer to get rid of the cough. And, if you can get a modified swallow test it will help you sort things out. When they told me I had this "spillage" I was like, well at least I'm not crazy ~ I'd been telling the doctors over and over that I didn't think it was happening when I was swallowing, and they'd give me that "no comment" doctor look, and jot it down in their notes..... Now.... call your doctor!

 

[rose]

My nose and the area around it almost feel like they are glued on. I wish I could find who made off with my nose as I was pretty partial to it.

Robert

You made me laugh :wink: I can't help you there. I do have problems breathing through my nose sometimes, but its definitely my soft palate cutting off the air, and its when I exhale, not inhale. I'm a lot more partial to my lips than my nose, (they're flattening out) maybe we can work out a trade LOL

 

[BethU]

I know what you mean. I have a great dentist Keeps me up doesn t ly me down all the way Gives me the suction so I have CONTROL OVER THE WATER and he doesnt use too much water But the dam sounds great I will mention that.

I checked out "dental dams" on Google and they are still in use. There's a picture of one on Wikipedia.
Dental dam - Wikipedia, the free encyclopedia

I'm going to see if my dentist is willing to use it ...
Beth

 

[olly]

for rose

i developed slight swollowing problems 18mths ago but developed jaw/chewing problems since the begining of the year.
i noticed you said you have facial spasms in the lower jaw/face. i have developed this and posted on the pls forum about it to others with pseudobulbar problems but they said they did not get them and i was confused. i found out on google hemi/facial spasms can happen in pseudobulbar problems.
before i started with my jaw problems i used to get twitching/rippling along my right jaw line mainly this is were i have started with the spasms. i describe it as a forcefull contraction that distorts the right side of my mouth causing it to turn in towards the left. it is more distressing than painfull and lasts for no longer than 10seconds and can happen with sudden facial movements like coughing,laughing.
does this sound familiar?
my pt came yesterday and is going to send a speech therapist out to see me for an evaluation and possibly tests.
i have a diagnosed of mnd but have had mainly umn symptoms for 9yrs now.
thankyou and take care
caroline

ps. here is a good link (i'll try again)
this gives info on bulbar problems and there are good diagrams/pics of facial/throat ,nerves/muscles.

 

[olly]

try again

http://www.google.com/search?q=faci...ox&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7ADBS

 

[BethU]

I know what you mean. I have a great dentist Keeps me up doesn t ly me down all the way Gives me the suction so I have CONTROL OVER THE WATER and he doesnt use too much water But the dam sounds great I will mention that.

Pat, I checked out "dental dams" on Google, and they are still in use, only they're not made out of rubber any more. They're latex or silicone.

There's an illustration of one on Wikipedia. They are basically like the masks that surgeons wear (tie around the back of your head), but they have an opening to isolate one tooth so the dentist can work on it.

(I tried posting the link to the illustration, but apparently you can't do that on the forum, and my post was pulled.)

Anyway ... this is one solution to the "squirting water down your throat" problem in the dental chair. I will see if my dentist is willing to use one ... and also if he'll try to work on me if I'm not reclined so far backwards. Sounds like your dentist is very sensitive to these issues. I don't think my guy knows ALS from a hangnail.
Beth

 

[patricia1]

The problems is when you get a cleaning you cant use the dam and the water is alot with the leaning but if you dont recline too much it helps.

Take to your dentist he will understand

Pat 1

 

[CindyM]

I have always had a strong gag reflex. Runs in the family, I think. Dental dams send me right over the edge, but I finally found a dentist that gave excellent advice. She has me lift me feet a couple of inches off the footrest, and take deep breaths. It keeps my mind occupied. Of course, lifting the feet while semi-reclined is no longer possible, so we will see...

My dentist said this problem does run in families and is more apt to happen to people of English descent.

 

[vmd]

rose:

Actually, the doctor did prescribe an antibiotic, and I took it for a few days, but did not finish the course. The doctor had told me that doctors do not really know which colds are bacterial and which are viral, so he gave me the option of taking the antibiotics. I seem to have developed a chronic cough based on spillage. This particular symptom is very disruptive. I am constantly clearing my throat and periodically have the scratching in the back of my throat, then I have the strong urge to cough.

 

[rose]

i developed slight swollowing problems 18mths ago but developed jaw/chewing problems since the begining of the year.
i noticed you said you have facial spasms in the lower jaw/face. i have developed this and posted on the pls forum about it to others with pseudobulbar problems but they said they did not get them and i was confused. i found out on google hemi/facial spasms can happen in pseudobulbar problems.
before i started with my jaw problems i used to get twitching/rippling along my right jaw line mainly this is were i have started with the spasms. i describe it as a forcefull contraction that distorts the right side of my mouth causing it to turn in towards the left. it is more distressing than painfull and lasts for no longer than 10seconds and can happen with sudden facial movements like coughing,laughing.
does this sound familiar?
my pt came yesterday and is going to send a speech therapist out to see me for an evaluation and possibly tests.
i have a diagnosed of mnd but have had mainly umn symptoms for 9yrs now.
thankyou and take care
caroline

ps. here is a good link (i'll try again)
this gives info on bulbar problems and there are good diagrams/pics of facial/throat ,nerves/muscles.

Yes, what you're describing sounds like the same area. The speech pathologist said it was the TMJ juncture. You can see an indent moving back and forth under my skin when its doing it. Usually the right side (everything seems to start on the right for me) but sometimes on the left. And the aching, there seems no rhyme or reason. Eating can trigger it, cold drinks can, or it can just happen too. I have not had it so severe that it distorted my mouth, but theres always that to look forward to LOL. It would make sense that it is UMN as that is a tightening/cramp, I've read others that have PBP say that they have this too, even though you'd think it would be pseudo bulbar . Caroline, if you can get the referral to have the partial baruim swallow I think it would tell you a lot. Of all the testing I've been through, this is the one that most amazed me that so much could be learned from it. Its different than a regular swallow test, its done with a speech pathologist, and you will swallow tiny amounts of barium starting with it as thin as water, working up to it mixed in yogurt or applesauce. I also got to eat some sandwiched between two graham cracker (or biscuits as you would say ) some people "take a pill" too, but I didn't do that. They can evaluate so much with this as they can see if any of what goes into your mouth works its way up into your soft palate; if it gets left behind in your mouth rather than being swallowed, and if it moves down properly after its swallowed. ... I started having the cramping/ aching mid winter, somewhere around the end of November to the beginning of December. This part since it started hasn't really changed much other than I get that nerve going back and forth on the left now, where at first it was only on the right. It sounds like we're similar in this, the question is what it means.... take care

 

[rose]

rose:

Actually, the doctor did prescribe an antibiotic, and I took it for a few days, but did not finish the course. The doctor had told me that doctors do not really know which colds are bacterial and which are viral, so he gave me the option of taking the antibiotics. I seem to have developed a chronic cough based on spillage. This particular symptom is very disruptive. I am constantly clearing my throat and periodically have the scratching in the back of my throat, then I have the strong urge to cough.

Have you had a modified swallow test performed yet? and was the antibiotic one that would work for aspiration type infection? I know how hard it is to finish out a course of antibiotics, but you already know how they say we ought to....

 

[vmd]

No, I have not had a swallow test since my most recent symptoms began. I started with limb weakness about a year ago, and did not think that I would develop bulbar symptoms so quickly. My impression was that bulbar symptoms develop years later in a person with limb onset. The irony is that my arm strength is comparable to what it was last year. I still lift heavy weights. There is very little that is predictable about MND. In my case, I seem to be progressing faster with bulbar symptoms now.

I wanted to ask those of you who have bulbar symptoms how often you have choking episodes. If I do not consciously think about how I am swallowing and eating, I would probably have more than I have now.

 

[patricia1]

I know if I worry about choking I choke. I guess it the stress factor. I always drink soda I was told the bubbles help with the throat muscle. or I drink chocolate milk or nector juices I never drink water. If you have your big meal in the afternoon its better because you arent as tired as you would be say at 6 or 7PM At least that works for me. Fatigue and stress is ALS enemies


Pat1

 

[Al]

Pat, I checked out "dental dams" on Google, and they are still in use, only they're not made out of rubber any more. They're latex or silicone.

There's an illustration of one on Wikipedia. They are basically like the masks that surgeons wear (tie around the back of your head), but they have an opening to isolate one tooth so the dentist can work on it.

(I tried posting the link to the illustration, but apparently you can't do that on the forum, and my post was pulled.)

Anyway ... this is one solution to the "squirting water down your throat" problem in the dental chair. I will see if my dentist is willing to use one ... and also if he'll try to work on me if I'm not reclined so far backwards. Sounds like your dentist is very sensitive to these issues. I don't think my guy knows ALS from a hangnail.
Beth

Hi Beth. Your link wasn't pulled. It had to be moderated. Took a bit longer than usual. Sorry for the inconvenience.
AL.