Old 05-22-2007, 06:40 PM #1 (permalink)
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i got a call from thre nurse today she told me that my barrium swallow showed occasional refux.i was wondering bacause i asked her would the test show weak muscles in the throat and she told me that it would.i was wondering if anybody had these test done that had als before with bulblar onset.
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Old 05-23-2007, 12:24 PM #2 (permalink)
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zac,

I had the barium swallow. It showed what I already knew - some miscoordination with swallowing. EMT thought it might be due to some arthritic changes in C4. Turned out to be bulbar-onset ALS.

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Old 05-23-2007, 09:06 PM #3 (permalink)
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so it will show if you have problems with your muscles in the throat
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Old 05-23-2007, 11:28 PM #4 (permalink)
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i HAVE HORRIBLE ACID REFLUX . IHAVE BEEN WONDERING IF IT WAS ALS
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Old 05-24-2007, 11:17 PM #5 (permalink)
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janf, I used to have it even before this illness, don't lie down soon after eating it will make it worse [at least that's the way it is with me] the valve that controls acid relux is a muscle so it is affected by als, but not with everyone. Barry
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Old 07-22-2008, 01:17 PM #6 (permalink)
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I have been diagnosed with laryngopharyngeal reflux (LPR) - a form of reflux that does not cause heartburn but causes a feeling of a lump in the throat and hoarseness. I have had two surgeries in the past year to treat this condition. During this same time I started experiening severe fatigue and more recently faciculations and cramps in my right foot and calf which is creeping up into my hamstring. I just had an EMG which was negative and a full MRI, also negative. I was told I have no sign of ALS or any other MND. I was told it was simply benign fasciculation but it did not address the fatigue. I am wondering if there is a connection btwn the LPR and the other symptoms.
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Old 07-22-2008, 01:41 PM #7 (permalink)
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zac,

My husband was hospitalized because he could not swallow. They ran all sorts of tests. One was the barium swallow. It showed the same as Pappy indicated in his post. The valve that is supposed to stay shut during swallowing was flapping open, allowing food or liquids to be aspirated. They also did an Endoscopy. They could never find the reason for him not being able to swallow at all (he was in constant drool mode, as he could not swallow his saliva). It resolved itself after about 4 or 5 days. Their theory was that a piece of meat had gotten stuck, but they never saw it.

This was about 9 months before he was diagnosed with ALS. He can still eat, but does it very carefully. It's nearly been two years since diagnosed. He has bulbar/limb onset.
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Old 07-22-2008, 02:14 PM #8 (permalink)
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i get bits of food that get stuck in my throat after eating and is a nightmare to get rid of and is uncomfor table. i also get acid reflux that burns my throat after eating.
i also have found i need to burp alot after eating as well,not lady like but it has to come out somewhere.
take care.
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Old 07-22-2008, 02:59 PM #9 (permalink)
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I don't mean to take away from the main focus of this thread, but I did have a question for Pappy. When they said that you had "miscoordination" in the swallowing process, where they referring to the esophagal muscles themselves, to the process of moving food to the esophagus, or both.

My barium swallow indicated that the esophogal muscles where within normal range, but that I had some "spasticity" and coordination issues in moving food to the esophagus.

Thank you,

Robert
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Old 07-22-2008, 07:22 PM #10 (permalink)
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Quote:
Originally Posted by zac111 View Post
i got a call from thre nurse today she told me that my barrium swallow showed occasional refux.i was wondering bacause i asked her would the test show weak muscles in the throat and she told me that it would.i was wondering if anybody had these test done that had als before with bulblar onset.
Zac, are you saying that they did or did not see weakness in the laryngeal muscles of the throat? Either way, perhaps you could have a "partial" barium swallow test, it is much more specific to the mechanisms of swallowing (unless this is what you had and I misunderstood).... to answer your questions, I've been diagnosed with MND, been advised to expect that it is bulbar onset of ALS. I do not have reflux that showed up on the tests, but do have several other problems with the process of swallowing, in my mouth and also in the throat. This is why I asked about the exact type of test you had, because if it was just a standard barium swallow, you most likely would want to pursue a more specialized test.
... Robert, the "miscoordination" description (I t think) is often used by our doctors when they want to distinguish from problems being caused by spasms or just weakness. At least this is how my laryngologist has explained the terminology to me. And yes I have the miscoordination in the mouth as well as throat, but it has also been used to describe some of the problems with my vocal cords too, Its probably stated that way for other doctors to understand exactly what is being observed, just as tremor and fasciculations are to different entities to the medical profession.
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Old 07-22-2008, 09:07 PM #11 (permalink)
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Diane - Thank you for the clarification on miscoordination. Right now it seems like if I can get it to the throat it goes down just fine (unless it is very dry or something like peanuts, which might be my hypersensitivity). I do have the sensation of "feeling the food" working its way down.

By more specialized test, do you mean a swallow study where they feed you barium coated foods of different consistencies? To clarify, my barium swallow (nastiest milkshake I ever had) was deemed "normal." It was the swallow study that picked some difficulty getting foods to the back of the throat.

If that is the case, then I would echo you in encouraging Zac to pursue the swallow study. My study was observed by both a radiology specialist and a speech pathologist, who made a much more thorough commentary than the "looks OK" response I got during the barium swallow.

Robert

Last edited by planningguy : 07-22-2008 at 09:08 PM Reason: typo
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Old 07-23-2008, 06:22 PM #12 (permalink)
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Andyb~I was told the same thing by my gastro about lpr. I has never heard of that or anyone having that untill this site (not a good sign in my book). I have had a lumb, it comes and goes. I dont have it that often.
I am going to an ent on monday for hoarsness, I have lost my voice 4x in the last 6 weeks. I did notice that it happen after being outside and we live on a golf course and there is alot of cotten in the air. I'm hoping that is the cause or maybe polyp on the vocal cord. It seems strange that we all have give or take the same symptoms, but hope that nothing of it is related to Als? It seems strange.....My neuro said there are alot things people have and it is not related to als. I have had all my symptoms for AROUND 6 months (that I know of) and the voice thing last 6 months. Does not seem like a coincident to me.

anyway....heres hoping things go well at the ent.

april
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Old 07-24-2008, 10:39 AM #13 (permalink)
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Thanks for responding April. I have so many strange things going on lately that I cannot keep track. Lately I have been noticing double vision, a feeling of goosebumps that goes down my right leg, pain in my right foot and this LPR.

Please let me know how your appointment goes.

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Old 07-24-2008, 11:53 AM #14 (permalink)
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Andyb~

I get that goosebumbs on my leg also! I use to get all the time, now I dont get it that much.

But, one of the symptoms for myesthenia gravis is double vision or vision problems and shortness of breath. I dont have vision problems that are bad, they get blurry or I had to increase my contact strength but nothing bad except 2 ocular migranes when all this started in december.

have your neuro check into MG since you had that vision problem

Take care and best of luck!

ps~ I have so many symptoms that is hard to keeo track, then someone posts and I am like "oh, me too"!

April
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Old 07-24-2008, 01:14 PM #15 (permalink)
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Andyb~I was told the same thing by my gastro about lpr. I has never heard of that or anyone having that untill this site (not a good sign in my book). I have had a lumb, it comes and goes. I dont have it that often.
I am going to an ent on monday for hoarsness, I have lost my voice 4x in the last 6 weeks. I did notice that it happen after being outside and we live on a golf course and there is alot of cotten in the air. I'm hoping that is the cause or maybe polyp on the vocal cord. It seems strange that we all have give or take the same symptoms, but hope that nothing of it is related to Als? It seems strange.....My neuro said there are alot things people have and it is not related to als. I have had all my symptoms for AROUND 6 months (that I know of) and the voice thing last 6 months. Does not seem like a coincident to me.

anyway....heres hoping things go well at the ent.

april
Hi April, probably best not to get your hopes up that the ENT doc you're scheduled to see is actually going to have answers for you, unless you have very obvious signs of acid reflux, a polyp, or something else that is fairly common.

There is an instrument your doctor will use to look at your vocal cords. I've had the pleasure of two different styles, one is a fiber-optic light on a very thin cable that is threaded down through your nostril into your airway. This one is good because its easier for a doctor to observe your soft palate's movement in addition to your vocal cords. The other style is a larger tube with a light on it that is put through your open mouth. With both styles should also have a camera function that can be employed to take a video. I believe this is called a Laryngoscope.

Your doctor will squirt some sort of numbing agent either into a nostril or down your throat, depending, give it a chance to numb you up a little, and then after the light/camera is in place, you'll be asked to make a variety of sounds. (Mostly the eeeeee though). When I first had this done, it was by a wonderful ENT doctor, I just adore him, very kindly, but he couldn't tell why my voice had problems. So we tried Prilosec just in case I had reflux with no symptoms or visible signs. Did not work.

A few months later he looked again, and told me that he just didn't have the level of expertise I needed. That the vocal cords maybe looked a little thin, but he just didn't know. He wanted to send me to a vocal cord specialist. The trouble was, that even though there is a world renowned one at Mt Sinai, (near me) he wasn't in my insurance network. However, there was someone finishing up a fellowship under him that would be in network. My doctor thought she was starting (in another office of the same ENT practice) in about six weeks from then. (this was the end of May of last year) Well, it actually took until September to see her, as she got married after finishing up with Dr Wu, and took time off. However, she took one look at my vocal cords, and recognized that they were bowed (atrophied) and were thin too (my original ENT doctor later told me that he was so proud of himself that he'd thought they looked thin LOL).

Anyway, this is not to say that what is wrong with me, is causing your problem, I just know how hard it is anticipating a new appointment, and hoping like crazy for answers, and then the let down, when, once again, nothing clear cut shows up. I hope this is not the case for you, and something easily correctable is found, but, if the specialist you see doesn't have answers for you, ask if there is a laryngologist (throat only) that you can be referred to (an ENT doctor is an "otolaryngologist" (ear nose and throat) good luck
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