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Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 7201
Experience:  Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
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I also fear Bulbar ALS have asked many Questions on this site

Customer Question

I also fear Bulbar ALS have asked many Questions on this site Ive had 2 negative Limb EMGs and three neurologists exams that say I don t have Bulbar onset, None of them did an EMG on my tongue or face. I got a diagnosis of silent reflux by ENT but the dysphagia has not gotten better with prevacid.
Submitted: 1 year ago.
Category: Neurology
Expert:  Dr. Frank replied 1 year ago.

neuromd2012 :

Welcome to Just Answer. I am an Adult Neurologist and was contacted to answer your question.

neuromd2012 :

Hello I am waiting for you to come online for a chat session

neuromd2012 :

as you are offline, I will switch this to the question and answer service, please get back to me with questions.

neuromd2012 :

one of the things I could say to you online, is that in bulbar ALS, the pseudobulbar affect is present in up to 50% of patients

neuromd2012 :

so emotional lability, meaning inappropriate crying, laughing,

neuromd2012 :

I would ask if you have any of those symptoms?

Customer:

No I dont have thosr symptons

neuromd2012 :

also with bulbar forms, you can have ALS dementia, which is a subcortical type of dementia,

neuromd2012 :

so you have problems of facial expression

neuromd2012 :

spasticity in the face

neuromd2012 :

also dysarthria

neuromd2012 :

or a spastic dysphonia

neuromd2012 :

your language is really messed up

neuromd2012 :

you sound like you have "hot potato" mouth

neuromd2012 :

so I would not attribute dysphagia, without any other cerebellar signs or other cranial nerve signs to als.

neuromd2012 :

I assume the other neurologists did not needle the tongue, because there is no atrophy or fasciculations

Customer:

No I haven't had those symptons. But there is something causing this swallowing issue. I read that this can present in Bulbar ALS before other signs

neuromd2012 :

you should have evidence of atrophy leading to dysphagia

neuromd2012 :

so your pharnygeal muscles should be more flaccid, your uvula should be hanging

neuromd2012 :

at least that is what I have seen in my practice life

neuromd2012 :

do you have any of that?

neuromd2012 :

do you have a gag reflex?

Customer:

How would that be checked for? Thanks

neuromd2012 :

when they put the tongue depressor in your mouth???

neuromd2012 :

are you there?

neuromd2012 :

I will switch this to the question and answer section, get back to me when you come back online

neuromd2012 :

Please rate my service if satisfied. Dr Frank T

Expert:  Dr. Frank replied 1 year ago.
Our chat has ended, but you can still continue to ask me questions here until you are satisfied with your answer. Come back to this page to view our conversation and any other new information.

What happens now?

If you haven’t already done so, please rate your answer above. Or, you can reply to me using the box below.
Customer: replied 1 year ago.

Yes I have a gag reflex, not sure about pharyngeal muscles...

Expert:  Dr. Frank replied 1 year ago.
the gag is a very good sign, the presence of a gag reflex when you have difficult swallowing suggests that it is not a lower motor neuron problem. In bulbar ALS, you have predominantly lower motor neuron symptoms, like a loss of gag and dysphagia. So I would suggest your dysphagia may be due to GERD or some other non-neurological process.
Customer: replied 1 year ago.

Ihave been treated for 8 weeks with prevacid with no improvement which is why I fear bulbar ALs would the neurologists be so sure I dont just by exam that they woild do emg for Bulbar signs I am negative on my limbs as of 1 month ago

Expert:  Dr. Frank replied 1 year ago.
bulbar ALS is rapidly progressive, so if you had enough appendicular symptoms to warrant not one but two emgs, then your bulbar symptoms would have advanced significantly in the interim. Having two normal EMG"s is of course a good sign that you do not have motor neuron disease.

I cannot explain why you are not better after 8 weeks, you should be scoped for a diagnosis if that is the case.
Customer: replied 1 year ago.

Isn't there such a thing as bulbar onset though so limbs test negative?

Expert:  Dr. Frank replied 1 year ago.
Hi. Bulbar Onset ALS means that the initial symptoms are involving cranial nerve musculature. It involves the corticobulbar fibers in the brain. That includes muscles of respiration and studies have shown that the first testing to identify this disorder can be pulmonary function tests, because the intercostal muscles between the ribs are often effected. But most if not all bulbar AlS patient have weakness and atrophy in the muscles of the arms and legs eventually as it spreads from corticobulbar to corticospinal fibers that are adjacent in the brain. The limb muscles can test negatively initially, as mentioned before, intercostal EMG can be positive early.
Customer: replied 1 year ago.
So it sounds like this could be Bulbar ALS. Should I ask for EMG of tongue or intercostal muscles. Though no one has suggested these to me. I have been to 3 different neuros and the just did exam of tongue muscles and cheeks eyes erc
Expert:  Dr. Frank replied 1 year ago.
HI. I cannot examine you here online, so I cannot give you a diagnosis. If you have symptoms suggesting bulbar ALS, you do need an EMG evaluation of your bulbar muscles, either the tongue or the intercostals if you are having problems breathing. In bulbar ALS, the examination of the tongue is usually sufficient to decide if you need an EMG, because the fasciculations create a rippling effect on the tongue itself which is usually easily seen. But if there is any reason for concern, you need the needle exam of the tongue to confirm that there are no fasciculation discharges.

I hope I was able to answer your question. As you know, there is a whole phobia regarding ALS, and many patients go from doctor to doctor looking for that diagnosis. Ask yourself if you fit that picture, or have general concerns that need to be followed by the neurologist.

Dr Frank T
Customer: replied 1 year ago.
I don't have fasiculations of my tongue that I know of
Expert:  Dr. Frank replied 1 year ago.
then it is unlikely that you have bulbar ALS, which may be what the neurologists told you. I would not think you need a needle exam of the tongue, intercostals or facial musculature in that situation.
Customer: replied 1 year ago.
So it wouldn't start with this throat issue. I would have fasiculations by now of the tongue.
Expert:  Dr. Frank replied 1 year ago.
Yes, that is correct

Tongue fasciculations, a loss of your gag reflex, etc.
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 7201
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
Dr. Frank and other Neurology Specialists are ready to help you
Customer: replied 1 year ago.

Update . Went to neuro today regarding swallowing problem. she checked my tongue for fasiculations test my babinski and a few strength tests I saw her a month or so ago, She said no ALS but did order a modified Barium swallow study and speech eval but why would she do this if no ALS

Expert:  Dr. Frank replied 1 year ago.
Hi. That is good news of course, but I am not surprised. The modified Barium Swallow is for dysphagia, and will show if there is some obstructive problem effecting your esophagus, like a pharyngeal/esophageal diverticula or something like barretts esophagitis. I assume the speech evaluation is to exclude some sort of dysarthria, even if you do not notice it, as the same lower motor neurons are involved though the cranial nerves. There are all these other neurologic problems, like oropharngeal dystonia, that can give you swallowing problems. It the speech pathologist and the test decides you have a spasticity to your pharngeal musculature, you can consider medications like Botox injection therapy. Another test in case the barium swallow is inconclusive, is a cine-esophagram, which is a video study of the swallowing reflex, it can provide more detail as to the exact muscles involved in the problem.
Please get back to me if you have questions Dr Frank T
Customer: replied 1 year ago.
Since she didn't order the EMG of tongue I'm assuming she doesn't suspect bulbar onset right? But the fact that she ordered speech eval makes me nervous. Why wouldn't she just do needle EMG to be sure
Expert:  Dr. Frank replied 1 year ago.
She feels like I feel and most neurologists that do EMG feel, that if you cannot see fasciculations on the tongue with inspection, they are not going to be seen with an EMG needle. If you do see them, then you want to look at things other than the fasciculations in the tongue, like the motor unit amplitudes and durations, polyphasics, etc. As there are other reasons to have fasciculations on the tongue than ALS, reasons that are more common actually (bulbar ALS with fasciculations of the tongue is 1:200000) and in those conditions, there are other findings on needle EMG (like if you have dystonic discharges) to give you a diagnosis other than ALS.

Customer: replied 1 year ago.
Thanks but that's to advanced for me lol. She says no ALS so why the speech eval?
Expert:  Dr. Frank replied 1 year ago.
sorry. Lets start over.

You look closely at the tongue, you don't see fasciculations. Then there is no reason for a needle exam, because if you cannot see them, the needle will not see them either. If you do see fasciculations, then you needle the tongue. Why? Because there are many other more common disorders that can cause tongue fasciculations, and they also have other changes that you can see on the EMG, to give you a sense that this is the problem and not ALS, or you can find things to suggest that yes, the fasiculations are from ALS (very rarely, 1:200000 in the US). The speech evaluation and the imaging study are to look at causes for swallowing problems. The speech eval will look for dysarthria which is the language issue associated with swallowing problems. The speech pathologist is going to look at if you become fatigued, to suggest you have a neuromuscular problem like Myasthenia Gravis, etc. There are other neurological diseases (like certain strokes) that can give you swallowing problems and language difficulties. But basically, the speech eval is for the neurologist to get a report that says you are normal, in most cases, so she can be confident she did not miss a speech problem. Some speech problems (like from a cerebellar lesion, can be subtle). I hope that answers your question.
Customer: replied 1 year ago.
Thank you so you don't think she is looking for bulbar ALS?
Expert:  Dr. Frank replied 1 year ago.
No. She is not looking for Bulbar ALS.

But she might be suspecting that you have a problem and this is not silent reflux either.

In Neurology, the basic theme is to cover everything, and when it comes to swallowing, it is a very complicated neurological system, no one feels confident by just checking your gag response if you have complaints, so we order the studies just to be sure. Did she think you had a language problem??
Customer: replied 1 year ago.
No she had me say a bunch of sentences when I saw her last month to test me when I feared bulbar als all normal. Didn't do that this time. She didn't mention any problem with me just speaking with her
Expert:  Dr. Frank replied 1 year ago.
she is just being thorough, she wants to be sure you don't have any language problem. (or any neurological swallowing disorder)
Customer: replied 1 year ago.
Thanks. I hope I am free from this swallowing issue and this fear of ALS sometime soon. And I hope I don't have a neuro swallowing disorder...
Expert:  Dr. Frank replied 1 year ago.
Do not worry. Let them look closely at you, then come back if you have questions Dr Frank T
Customer: replied 1 year ago.
Yes thanks. Are the other neurological disorders it could be incurable like ALS is or could it be something not so drastic
Expert:  Dr. Frank replied 1 year ago.
Well anything that effects your swallowing is very serious. I am not going to lie to you about that. It can effect your airway, you get pneumonias, etc.
Customer: replied 1 year ago.
So either way I'm looking at something awful. Guess I knew it wasn't gonna be good well at least I know the probable outcome
Expert:  Dr. Frank replied 1 year ago.
Let them do the tests, it really may be nothing at all. I assume you can swallow anything (usually in neurological swallowing problems, you cannot swallow liquids, solids are fine) and you are having problems with coughing because of aspiration (secretions getting into your lungs). If you do not have any of that, then this is probably nothing.
Customer: replied 1 year ago.
What are the other neurological problems it could be?
Expert:  Dr. Frank replied 1 year ago.
You have to reduce your anxiety. Thinking about conditions that do not exist has brought you to a position of anxiety. I do not think I am helping you talking about conditions that do not exist.

I am here to help. If you have a lab test and do not understand the results, let me know. Dr Frank T
Customer: replied 1 year ago.

Went to ENT for follow up for reflux she looked back there with a small scope at my throat and vocal cords would she have seen changes if Bulbar ALS in my throat muscles

Expert:  Dr. Frank replied 1 year ago.
Hi again, If you had swallowing problems as a result of ALS, then you would have changes noted on the laryngoscope. The smooth muscle that composes your pharynx would have been flaccid, your uvula would be hanging, the pharnygeal arches sagging. Did she mention any problems to you?
Customer: replied 1 year ago.
None of those problems. She doesn't really know what it is. Told me to continue Prevacid and add mucinex to mess but would she see post nasal drip with scope
Customer: replied 1 year ago.


Since my previous Questions to you I have seen an expert in ALS at columbia presbyterian hospital in New York City. He did a full exam and looked at my 2 previous EMG's of limbs one 2 months ago and 1 8 months ago. He did a thorough neuro exam. Found negative babinski Hyperreflexia which I have had fior years But what scared me was positive hoffmans bilaterally. He told me I appeared very anxious and that I did not have ALS and did not want to do further testing inless other symptons developed. I wanted a EMG of tongue as I am convinced of bulbar as you know from previous posts, however he did not order one. I got the other neuro to order one for me at weill cornell on 8/8 will this help determine ALS I had a normal swallowing study.

Expert:  Dr. Frank replied 1 year ago.
Hello. thanks for the follow up. So that is all good news. Especially the normal swallowing study, as it is hard to have tongue fasciculations and normal swallowing, so I expect your tongue EMG to also come back normal. Please get back to me with questions if I can help Dr Frank T
Customer: replied 1 year ago.
Thanks. I wonder why the expert didn't want EMGs. Especially with hyper reflexia and hoffmans. But all he sees are ALS pts. Should I feel confident about his diagnosis without testing
Expert:  Dr. Frank replied 1 year ago.
That is correct. He thought you were anxious as a cause of this problem and saw no reason for another EMG.
Customer: replied 1 year ago.
Is there any testing I can do with my mouth to reassure me. I still remain with difficulty swallowing solid food it feels stuck in my throat
Expert:  Dr. Frank replied 1 year ago.
did you get a barium swallow study, and then an upper endoscopy? those are the studies to evaluate swallowing, other than meeting with a speech pathologist for an evaluation.
Customer: replied 1 year ago.
I had a swallowing study with barium in different consistency of foods it was X-ray and video it was normal. Then I had an ENT do an esophaguscopy all normal. Would any of those show bulbar ALS
Expert:  Dr. Frank replied 1 year ago.
both would have shown changes if your glossopharyngeal, hypoglossal, or the ansa cervicalis was effected.
Customer: replied 1 year ago.
Those are muscles affected with bulbar ALS
Expert:  Dr. Frank replied 1 year ago.
those are the nerves that come from the brainstem, that are effected in bulbar ALS. All three work in unison to make uniform peristaltic movements of the back of your throat, and down your esophagus. You lose that communication between the nerves early on in bulbar ALS, so that is why the doctor, if he only sees ALS, knew that you did not have ALS
Customer: replied 1 year ago.
It was the ENT that did those esophagus tests and a radiologist and speech pathologist that did barium swallow not the neuro. Would they be able to tell if I had bulbar thanks
Expert:  Dr. Frank replied 1 year ago.
yes
Customer: replied 1 year ago.
Thank you don't mean to be a bother
Expert:  Dr. Frank replied 1 year ago.
no bother. good luck to you
Customer: replied 1 year ago.
Thanks. EMG on Aug 8th for my tongue. Nervous. Thanks for answering my questions. My family and friends are sick of me!
Expert:  Dr. Frank replied 1 year ago.
you are welcome. Dr Frank T
Customer: replied 1 year ago.
Last question I know you can't diagnose me but woth all the exams and testing so far do you think I have bulbar onset?
Expert:  Dr. Frank replied 1 year ago.
I would say that the chance you have bulbar onset ALS is less than 0.0001%. The incidence of bulbar onset ALS is roughly 1:200,000 in the general population, and you have been tested repeatedly, and tell me your tests are negative. ALS phobia (see attached abstract) is well described and has a much higher incidence than the disease itself.

http://www.ncbi.nlm.nih.gov/pubmed/23096027

I cannot diagnose you here online. I can tell you that many other patients come to JA with the same story, that they have had 6 or more EMG's, all normal, yet they cannot drop the idea that they are developing ALS. Phobias are completely treatable and curable. ALS is not, so I would suggest that you consider this diagnosis as obviously this is causing you extreme anxiety.

Customer: replied 1 year ago.
Hmmmm. Thanks
Expert:  Dr. Frank replied 1 year ago.
you are welcome please rate my service if you can. Dr Frank T
Customer: replied 1 year ago.
Is cough a sign of bulbar ALS. I am going for EMG testing for this 8/8 what should I make sure the test thanks
Expert:  Dr. Frank replied 1 year ago.
Hello again. An absence of cough is more consistent with bulbar ALS. You should ask for a needle exam of your platysma muscle (it is on your neck) as that is a very fine muscle that can be effected by bulbar ALS, and the tongue as we discussed earlier. Good Luck to you . Dr Frank T
Customer: replied 1 year ago.
For the past two days I feel like everything goes down the wrong way like tickling sensation then I cough feel a cough happen after a bit. I had a modified barium swallow 4 weeks ago which I'm told was normal. Isn't bulbar ALS fast enough to have affected my swallowing in that amt of time. Thanks
Expert:  Dr. Frank replied 1 year ago.
you are welcome. that normal barium swallow is good news, as you know, your chance of having bulbar ALS is exceedingly remote. Please remember to rate my service, as that is how I am compensated for my work. Good Luck to you Dr Frank T
Customer: replied 1 year ago.
Could the swallowing mechanism change in 4 weeks
Expert:  Dr. Frank replied 1 year ago.
Well you had symptoms leading to having the barium swallow, correct?

Anything can change in 4 weeks. It sounds like you are having trouble swallowing, but have not lost your ability to swallow. In ALS, you usually lose your ability to control your secretions first, so you drool.
Customer: replied 1 year ago.
I think you are tiring of me Im so sorry. Just don't understand what these symptons are coming from if not Bulbar.
Expert:  Dr. Frank replied 1 year ago.
did you get endoscopy/biopsy of the esophagus? eosinophilic esophagitis is my guess.
Customer: replied 1 year ago.
Not recently. I did in 2009. But I had an ENT do an esophaguscopy. No biopsy it looked ok. Still thinks silent reflux. But that's his thing and I've been on nexium or Prevacid since may.
Expert:  Dr. Frank replied 1 year ago.
here is a webpage from the Mayo clinic on EE. you need a biopsy to diagnose this condition, it can be overlooked on inspection alone. If you have a suspicion, you should check your absolute eosinophil count when symptomatic. The mayo came up with this disorder, maybe you should go see them?

http://www.mayoclinic.org/eosinophilic-esophagitis/

http://en.wikipedia.org/wiki/Eosinophilic_esophagitis



Customer: replied 1 year ago.
Will check it out thanks. I still believe it is Bulbar ALS but no one listens...
Expert:  Dr. Frank replied 1 year ago.
you are welcome, please remember to rate my service, as that is how I am compensated for this work Dr Frank T
Customer: replied 1 year ago.
Looked at symptons of that on mayo site. I don't have heartburn or vomiting. I have difficulty swallowing so I don't think that's it. EMG in 3 days. Hope I'm wrong. I know good luck ...
Expert:  Dr. Frank replied 1 year ago.
good luck
Customer: replied 1 year ago.
Is that necessary really?
Expert:  Dr. Frank replied 1 year ago.
yes
Customer: replied 1 year ago.
My husband told me not to use these sites should have listened. I will rate you
Expert:  Dr. Frank replied 1 year ago.
let me know about the EMG ok?
Customer: replied 1 year ago.
Sure if you want. They haver scheduled for an emg2/NCV. Don't know what that means. Hopefully Bulbar testing
Expert:  Dr. Frank replied 1 year ago.
NCV means nerve conduction velocities? usually it is NCS....

emg2 probably means 2 extremities. You bill, and therefore allocate time spent by number of extremities.

I would call ahead and inquire if you are getting a bulbar study, tell them you have had 2 extremity studies already, and they won't get paid by insurance.
Customer: replied 1 year ago.
I did thank you.Do Speech or swallowing problems occur first in bulbar. What panicked me last night and today is feeling like constriction in throat. I drink and a few minted later I cough a bit and it tickles. I'm afraid I'm aspirating
Expert:  Dr. Frank replied 1 year ago.
Hello. Speech problems are more subtle, they effect the facial muscles as well as lingual muscles, so it is different than swallowing problems, that are lower cranial nerves. There is no set rule which cranial nerves are effected first in a case of bulbar ALS, it usually is a patchy process, so any type of pattern can happen. It does not have to be symmetric involvement, so you might just have atrophy on one side of your tongue, or your palate may sag on one side, or one side facial weakness, etc.

what did the speech pathologist say? did you see them and have a speech study as well, or just the swallowing study?
Customer: replied 1 year ago.
Just the swallowing study. Didn't order speech study. Would als specialist I saw July notice those things?
Expert:  Dr. Frank replied 1 year ago.
yes, they would have scheduled you with a speech pathologist if you had slurred speech.
Customer: replied 1 year ago.
Would they have noticed sagging palate or tongue atrophy. Today I've had this awful sensation when I eat or drink I get a tickle and cough a couple of times. I think bulbar
Expert:  Dr. Frank replied 1 year ago.
HI. They would have noticed it.
Customer: replied 1 year ago.
Does this tickle cough thing sound like bulbar
Expert:  Dr. Frank replied 1 year ago.
Hi. I would say no, not bulbar ALS presenting as a tickle/cough, with a normal swallowing study.
Customer: replied 1 year ago.
EMG/NCV normal. You wanted to let me to let you know. They did under my chin above my lip and under my eye and felt it was enough to rule out bulbar. I need to accept that
Expert:  Dr. Frank replied 1 year ago.
HI. yes, they did some very small, fine muscles on your face. The reason is that the number of muscle cells to motor unit of nerve is very small, so they are a sensitive measure for motor neuron disease involving the face. So I am glad to hear you are accepting the findings. Please let me know if I can help Dr Frank T
Customer: replied 1 year ago.
Thanks for the help
Expert:  Dr. Frank replied 1 year ago.
sure anytime bye

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