Old 10-24-2017, 12:19 PM #1 (permalink)
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Default Moderate Dysphagia found in Swallow Study, plus tongue aches

Hello all, thank you for your community. I have been seeking some form of diagnosis for a year or so now after beginning a variety of neuro type symptoms last Fall... which were initially numbness and tingling (I know, not ALS), which morphed into body wide twitches (worries began here)... which I have accepted now though as BFS, following a clean EMG this past March and opinion of my neuro, who is part of a large academic group. My newest set of symptoms which began in early August are in the facial and throat area, and boil down to an achy tongue after use (talking, eating) and swallowing issues which led my neuro to have me get a
modified barium swallow study last week. The findings of this were moderate dysphagia which is presenting with a Zenker's diverticulum, mainly on left side, by also on right. In my research and in talking to the doc that performed it, it seems that this can be cause by either (i) age or (ii) weakened muscles in the larynx. She actually mentioned "MND" to me as a "likely" culprit... (which of course scared the pants off of me). I understand most folks with bulbar onset ALS seem to begin with slurred speech, which I do not have, and my neuro seems to completely disagree with the speech doc's statement regarding "possible MND", given that I had a second EMG only 4 weeks back, including a needle through the neck to tongue, which came out fine, along with a clinical exam last week of the bulbar area which was also fine. Any suggestions or thoughts would be greatly appreciated, this is all extremely confusing to me. Is it possible/have we heard of cases of bulbar ALS beginning in one so very small muscle space like the pharynx? I am just scared to death of waking up one day and no longer being able to swallow... Thank you so much for your time,
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Old 10-24-2017, 03:11 PM #2 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

Just a few questions if you don't mind.

How old are you? Are you male or female?

You mentioned "My neuro, who is part of a large academic group."

Are you a Med student?

We've been tested by many Med students in the past. (Don't take offense.)

You wrote...

"Given that I had a second EMG only 4 weeks back, including a needle through the neck to tongue, which came out fine, along with a clinical exam last week of the bulbar area which was also fine."

So... ?
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Old 10-24-2017, 03:42 PM #3 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

Hello Al - Good clarification questions - my answers:

1. I am 39, 40 next May (and a Male)... and definitely NOT a med student... don't actually do anything in healthcare, I am in the finance/accounting area
2. I am a patient at the Health System for the Univ of So FL (a large Neuro practice in the area).
3. My sentence regarding "Given that I had a second EMG..." was a reason as to why my neuro did not agree with the doctor that did the swallow study, who made the comment that my dysphagia is "likely from a MND"... the neuro doesn't agree with that b/c of the very recent EMG that was fine...along with a clinical exam of the limbs and bulbar area that didnt show any issues. All that said, the neuro admitted that she cant really clinically examine the larynx muscles (obviously), nor can she EMG the larynx muscles... so while the tongue EMG was just fine, it was the tongue, and not the larynx.

Thank you.
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Old 10-24-2017, 06:31 PM #4 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

I would run, not walk away from the "likely culprit" neuro and her practice. I have heard of no bulbar ALS cases in which an EMG that included the neck and tongue was clean a year in from symptoms.

I would see a gastro for a consult about the swallowing issues and see where that takes you. Twitching, numbness and tingling can all reflect unrefreshing sleep, which difficulty in swallowing and/or gastro discomfort wouldn't help.

Best,
Laurie
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Old 10-24-2017, 07:46 PM #5 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

Thank you, Laurie... makes good sense. I guess I should have also been more clear in my diatribe up top too... while it was the Neuro that ordered the barium study, it was performed by a different “swallow specific” doc... and it was that doc that stated MND as likely culprit for my swallow issues... but I agree with you... run/walk away from that swallow doc.
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Old 11-08-2017, 08:22 AM #6 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

Hello All - I completed my visit consult with the GI/Gastro earlier this week and his report was the following - everyone has these pouches in their throat, some larger than others, but we all have them... what is the "norm" during a swallow is for there to be enough muscle action to not have anything end up in them... in you (me) it looks from the video that something is not functioning the way it is supposed to be with that action... with more demonstration of the issue on the left side. He was not overly concerned, and said there is nothing really to do other than wait and see if it gets better, stays the same, or gets worse. While I suppose a "good" visit, it appears we are back again to some sort of muscle issue with the swallow action... which from what I have gathered, is really not how something like bulbar ALS would present itself. Any thoughts would be greatly appreciated. Thank you.
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Old 11-12-2017, 05:13 PM #7 (permalink)
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Default Overactive Gag Reflex

Hello - I have added a new, pretty annoying, symptom to my list of some mild swallow troubles and what I have termed a dull ache/fatigue feeling in the tongue after use... these symptoms continue despite a clean tongue EMG about 6 weeks back. Anyway, for the last week I have been experiencing every time I eat something what feels like a gagging sensation... the sensation one would have if you stuck your fingers in your throat... I dont vomit and can still eat, but it sure makes it tough. My question for the community is during my readings of the other sections on this site dealing with the gag reflex topic, there were really two sides - some PALS had an overactive gag reflex, others seemed to have theirs go non-existent and never had the overactive one. What I was not able to tell from reading the postings was whether the PALS that experienced the overactive reflex experienced this PRIOR to any sort of MND diagnosis? Of note, my neuro visit and EMG about 6-7 weeks back was all clean... so I am perplexed. Thank you!
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Old 11-12-2017, 05:28 PM #8 (permalink)
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Default Re: Moderate Dysphagia found in Swallow Study, plus tongue aches

Mod note- Merged threads. Please continue posting in your existing thread. It helps members see posting history in one place.
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