Bulbar symptoms

[planningguy]

This is a question about bulbar symptoms. If this has been covered thoroughly in the past, if someone could point me to a relevant thread I would appreciate it.

I have another post talking about my experience generally, but had some specific questions about bulbar symptoms:

1. Is there any tongue sensation associated with speech difficulties? This pertains only to speaking, not the tongue at rest. I am having trouble with "sh" sounds and other syllables that require holding the tongue in a certain position without touching the teeth. I have a consistent sensation that I can only describe as "pulling" underneath my tongue where it attaches to the soft tissue at the bottom of my mouth.

2. I guess the tongue at rest component above is a bit of a joke, because right now my tongue feels awkward in my mouth, and I have "forgotten" its normal position when not speaking or eating. Is this sensation something associated with bulbar symptoms?

3. I have a swallow test coming up, but what types of things do you first notice being difficult to swallow? I have heard that it is thin liquids, but right now I can swallow water and saliva (when there is enough of it) fine. I just feel like the first stage of swallowing after moving food to the back of my throat is "broken." I don't have much sensation, nor to I feel muscles contracting. I have trouble with dry foods and small pieces.

4. Are jaw and neck muscle soreness while eating a common symptom?

I am really trying to be calm, but I am one of those logical people that his to keep checking and rechecking my information against experience.

Thank you,

Robert

 

[patricia1]

Robert
My first symptoms were family asking me if I were tired I guess my speak was slurred Then I noticed when I stuck my tongue out it went to the left it quivered and I couldnt touch my back teeth with my tongue,or move my tongue rapidly back and forth. I choke on water easily .Now of cause I have progressed But thats after 9 years of ALS

Pat 1

 

[planningguy]

Thank you, Pat.

That helps put my mind at ease a bit. My tongue mobility is pretty good, and I can touch my back teeth on top (can't on the bottom, but can't remember if I ever could on bottom. My teeth go pretty far back.). I do notice my tongue gets tired probing the cap on one of my rear teeth (used to be a habit of mine), but the tongue gymnastics are probably biasing my results :-D.

I'm trying not to stress on whether the tongue quivers or not or its appearance because I have read, unless there is a significant deviation from the norm, that most people cannot distinguish between normal tongue tremers and neurological symptoms, and only stress themselves out more.

My tongue is not drifting to either side when I stick it out. It's just the mispeaking and awkward feeling combined with the difficulty swallowing that have me troubled. Pat, did you do a swallow study at any point during the diagnosis process, and if so, what were the results?

Thanks again,

Robert

 

[patricia1]

I Had A Swallow Test And It Was Good

 

[planningguy]

Good as in no abnormalities?

 

[BethU]

Hi, I'll answer too, as I also have bulbar symptoms. I had (have) no sensation from the fasics in my tongue, and had no idea I had any till an ear-nose-throat doctor spotted them and sent me to a neurologist. I have never experienced any unusual sensations in my tongue or mouth, other than the fact that I can no longer move my tongue around much.

I also did not notice my speech was beginning to slur until others pointed it out to me. Of course, I have become much more aware of my speech impediment as it has worsened greatly over the last two+ years.

Had a couple swallowing tests after I developed trouble swallowing liquids. The swallowing tests showed I have "exposure" to aspiration ... that is, I come pretty close to aspirating liquids with every swallow, but am not actually aspirating. (I do sometimes choke, even being careful.) I never take a mouthful of liquid, only very tiny sips, and I swallow liquids in the "chin tuck" position. Ordinarily, I can swallow small bites of sold food pretty well if they don't require chewing.

Can no longer touch my tongue to my left cheek, but can still move it very slowly back and forth, and the tip up and down a bit.

Never had any jaw or neck soreness.

Hope this helps. The technician who conducts the swallowing test will give you a lot of feedback on what is going on with your swallowing, if anything. The two I have had have been very helpful and willing to explain things.

Good luck with the test!
Beth

 

[patricia1]

Good as in no abnormalities?

My problem is my gag reflex it is very active So I choke from gagging not really it going down the wrong pipe My test was normal with some slowing

 

[planningguy]

Pat - Thank you for the clarification.

BethU - Thank you for all of the information, especially more detail on the swallow test.

Neither of you mentioned any tongue sensations (BethU you specifically stated that you didn't have any at least in terms of fasics). Is this pretty common too? I have experienced some tingling on my tongue, but mostly a burning sensation that started on top of my tongue, but I now feel it underneath as well.

Robert

 

[patricia1]

I get tingling almost like when your hand fall asleep and its starting to wake up If you know what I mean and If I hold my tongue aganist my front teeth I feel the facsis No burning yet

 

[olly]

i started with slight swollowing problems over 18mths ago but developed jaw/chewing problems early this year.
i have problems sometimes choking on liquids and saliva but find with food it gets stuck at the back of my throat like the back of the tongue is weak and can not force the food down.
i do get tingling in my tongue and if my jaw is bad when i stick my tongue out it goes to the right,also i do have soreness around my chin bone.
my pt has been today and is going to send a speech therapist out to see me and i may have to have an evaluation/tests done for these problems.
take care
caroline:-D

 

[BethU]

This is not on the subject of Robert's question, but Pat, you mention gag reflex. Mine is very strong, too. In fact even the neuro who told me I DIDN'T have ALS (he has since been overruled) commented on my "very lively" gag reflex.

I wonder if this is what causes my spitting out. It is strange and violent and very embarrassing if other people are around, but sometimes (without warning) when I try to swallow, the stuff spits violently out of my mouth instead of going down the other way. It's like the "spit take" in comedy.

I never made the connection of this to my "lively" gag reflex, but I bet that's the cause! I am afraid to go to the dentist, as the idea of lying back in a chair with people squirting water spray in my mouth is a recipe for disaster. In the olden days of dentistry, there was such a thing as a "rubber dam," a thin sheet of rubber that they stretched across inside your mouth, isolating just the tooth they were working on, which prevented anything from going down the throat/airways. If I could find a dentist who still had one of those, I might trust myself to the dental chair again.

Thanks to everybody who shares on this forum. Every day I learn a little more. It helps me to understand what's going on, even if no one can cure it.
Beth

 

[vmd]

I also have a strong gag reflex, but I think I have always had this. What type of stimuli will trigger the gag reflex for you guys? Another puzzle is that I have read that a lack of a gag reflex is also indicative of ALS. Is this true? Perhaps, later in ALS?

Do any of you choke on your saliva? I seem to at various times, or I will have coughing bout when the saliva or post-nasal drip goes down the trachea. I also experience this at night, I will wake up coughing. This has become more of a problem since I came down with a bad cough that does not want to go away.

I believe patricia 1 said she had post-nasal drip, but this eventually subsided. If this is true, why did that happen, do you know? Like the rest of you, I also experience tingling in the back of my tongue.

 

[patricia1]

This is not on the subject of Robert's question, but Pat, you mention gag reflex. Mine is very strong, too. In fact even the neuro who told me I DIDN'T have ALS (he has since been overruled) commented on my "very lively" gag reflex.

I wonder if this is what causes my spitting out. It is strange and violent and very embarrassing if other people are around, but sometimes (without warning) when I try to swallow, the stuff spits violently out of my mouth instead of going down the other way. It's like the "spit take" in comedy.

I never made the connection of this to my "lively" gag reflex, but I bet that's the cause! I am afraid to go to the dentist, as the idea of lying back in a chair with people squirting water spray in my mouth is a recipe for disaster. In the olden days of dentistry, there was such a thing as a "rubber dam," a thin sheet of rubber that they stretched across inside your mouth, isolating just the tooth they were working on, which prevented anything from going down the throat/airways. If I could find a dentist who still had one of those, I might trust myself to the dental chair again.

Thanks to everybody who shares on this forum. Every day I learn a little more. It helps me to understand what's going on, even if no one can cure it.
Beth

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.

 

[rose]

I also have a strong gag reflex, but I think I have always had this. What type of stimuli will trigger the gag reflex for you guys? Another puzzle is that I have read that a lack of a gag reflex is also indicative of ALS. Is this true? Perhaps, later in ALS?

Do any of you choke on your saliva? I seem to at various times, or I will have coughing bout when the saliva or post-nasal drip goes down the trachea. I also experience this at night, I will wake up coughing. This has become more of a problem since I came down with a bad cough that does not want to go away.

I believe patricia 1 said she had post-nasal drip, but this eventually subsided. If this is true, why did that happen, do you know? Like the rest of you, I also experience tingling in the back of my tongue.

Have you had your cough checked out? I had water go down the wrong way, knew it was down in my chest, gradually developed more and more of a cough, was achy ~ went on that way for a couple of weeks until I finally started running a fever high enough to warrant (in my mind LOL) finding the thermometer. I had over a 102 temp at that point, and it turned out it was aspiration pneumonia. ... also, it may not be post nasal drip that makes you choke and wake at night. I kept insisting that it seemed to me that when I did get water or saliva down my windpipe that it wasn't usually when I was swallowing, and it happened a lot more when falling asleep or during the night than in the day. The swallow test revealed that I have what they termed "spillage" that fluids will leak down my throat without me swallowing.

As to the original question, sometimes I feel my tongue twitching, sometimes its more of a pop rocks candy sensation. Most of the time I don't feel it at all.

... with swallowing, it seems it was so gradual that I wasn't that aware that food just didn't t want to move out of my mouth. It wasn't like one day I noticed it and the day before I was fine. Now,lots of residue will be left behind after I eat (yuck). Soft mushy foods such as rice pilaf occasionally (rarely) get pushed up in my soft palate area instead of down when I swallow, but nothing has actually come out my nose yet with the exception of orange juice once. It seems like I'm more successful getting food to go down the right side of my throat than the left.

I hate to even say what I can eat, for fear I'll curse myself and tomorrow will have trouble with that too! But suffice it to say that chewy stuff like bagels aren't worth the effort to try to eat, Thin liquids tend to go down the wrong way, but only when I'm not thinking about it, which is key, because when I concentrate, and tip my head forward when I swallow its fine.

I occasionally get spasms of the cheeks jaws when chewing, get an achy feeling like I've been laughing a lot. Sometimes this happens when I've not been eating, it just happens. There are so many variations on how individuals experience this.

Having a modified swallow test is excellent though. The speech pathologists that did mine ~ I was lucky and had two in the room!~ found more wrong with me than I was aware of. Which is not good for me of course, but my point is, if there are problems with you, they will be found. A trained specialist is much more likely to catch any malfunction before you're aware of it. Or at least this was true in my own situation. Having the test now will also provide a base line for comparison later if your symptoms continue.


As to the hyper/lacking gag reflex, I've read that hyper is pseudo bulbar (upper neuron) and lack of is bulbar.

Good luck to you,

 

[vmd]

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.