Barium Swallow - Dysmotility

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Sundaymorning

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Hi All,

I really didn’t want to post here yet because I know it’s not fair to PALS to answer to “worried” people. To be honest I don’t even know what I’m seeking by posting because I know I will just have to wait for the results from my doctor. Appreciate anyone responding to my story...

I’m a 28 year old female. my first symptoms started back in May. With just an 24/7 right eye twitch. Thought nothing about it, everyone gets those. Well it continued for a month and a half.And while working remote during the COVID-19 I noticed muscle twitches on my right leg so I wondered if it could be a pinched nerve so reached out to my GP. They wanted to do an EMG. Didn’t know what that was so I looked it up (which was a terrible decision so that’s when the anxiety set in). Of google mentions ALS and that was my first time really researching it other than the ice bucket challenge (which I will now fully support ALS in every way I can) The muscle twitches became body wide so I knew that could be my anxiety. Same with the lump in my throat, I also knew that could be anxiety so I didn’t even bring that up to the neurologist.

I have muscle cramps in my calves, feet and hands. I didn’t have any signs of weakness, but they did perform the EMG on my left side (leg, arm, back). Which was clear and put me more at ease. However the throat issues continued and my facial twitches (lip,jaw,cheek) became much worse. I started feeling like I had twitches inside of my throat which Was a really odd feeling. Trouble swallowing but never choking. I would get food stuck in my throat and would find some tiny pieces coming back up later. I develop forehead spasms, which are the most intense twitches i get. My entire face will tighten and the entire forehead contracts and It effects both eyes (which I know is not very typical of ALS). I have hoarness at random times. I’ve only had 4 choking episodes where liquid has gone down the wrong way but didn’t put them together because they’ve happened so far apart (it’s not like every day).

so the reason I’m posting and have become scared in the last few hours is because I had a Barium Swallow Test. The results show that I have mild Dysmotility. Basically it would take an additional swallow for me to clear the contrast in my esophagus. They haven’t really explained to me what the Dysmotility means because my GP wants to wait to put the pieces together because they’ve schedule another EMG for the bulbar region. I just know that means my muscles or nerves in my throat aren’t working properly.
 
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lgelb

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This doesn't sound like ALS to me, but certainly something to follow up. Swallowing issues can come up with damaged nerves in that area, or a tumor. Both are certainly treatable. GERD and infections are other thoughts.

On the other hand, since you say it all began with twitching, it could all be part of something called "hyper-arousal," where lots of different parts of the body are overextended and it starts with stress of some kind.

Keep working with your doctors, but insofar as ALS is concerned, I would not worry.

Best,
Laurie
 

Sundaymorning

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Thank you so much for your response Igelb! I received a message from my doctor this afternoon that they want to do a VFSS/modified barium swallow test since the first test was just a regular barium swallow. One doctor is telling me no concern for aspiration and the other doctor is giving me pre aspiration tips. So not sure who to believe...

Thankfully I have my EMG this Thursday..so I will post back on my results. And I will look into hyper arousal! Thanks again.
 

Sundaymorning

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Posting back an update—
They warned me before the test that my study could come back abnormal because i receive cosmetic Botox in my eyebrows. They said since it’s a chemical it can surprisingly spread to other muscles that around around the forehead. So that ended up being the case. The EMG shows abnormalities in my right jaw which I’ve had pain in (which I thought was due to TMJ). They said it’s likely due to Botox but they can’t rule out any other causes. Which I want to believe that but with my barium swallow test showing possible Dysmotility, I’m afraid this may be bulbar ALS. To be honest I’m really scared as I’m so young. I haven’t received next steps yet as my GP is out of the office but I messaged the neuromuscular doctor that performed the EMG for next steps. I have an in office appointment with her in September, so I’m not sure if I have to wait until then. My test results are below—


"Conclusion:
This is an abnormal study. There is electrodiagnostic evidence of ongoing denervation and subacute reinnervation in the right frontalis and the right masseter which likely attributes to the patient's history of botulinum toxin injections, however other etiologies cannot be definitively ruled out. There is no electrodiagnostic evidence of a lower motor neuron disorder affecting the right lower extremity or the remaining bulbar muscles that were examined. Additionally, there is no electrodiagnostic evidence of a disorder of peripheral nerve hyperexcitability. No fasciculations were observed electrographically during the study. "
 

Nikki J

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You need to wait and see what you are told. I am guessing ( guessing only) they will suggest 6 month off botox and reevaluate
 

Sundaymorning

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I’m thinking that will be the case as well. It looks like they want me to go to the ALS clinic at Duke since I’m in NC.

I’m just needing somewhere to vent. It’s frustrating because of my age, I didn’t seem to be taken very serious by the neurologist. At first they just assume it was anxiety which I even confessed at this point I don’t know what’s really a symptom and not because I know I’m anxious and it can produce weird symptoms. So I instantly went on medication to help calm any irrational thoughts. But now that my test are showing abnormalities, the doctors have become more alert that maybe this isn’t just anxiety and there is something at play.

This just seems like such a rare case, I’m 28 and my first symptom for months was a constant eye twitch. And I don’t have any speech problems which everyone seems to say that bulbar typically starts there but instead I have swallowing problems. The neuromuscular doctor even told me before the exam that ALS typically wouldn’t start in the esophagus, its typicallyPharyngeal. Like how my barium swallow test showed but again it wasn’t modified so I will still need to take that, bulbar just seems so rare for someone my age. Just none of this makes sense to me. I know the waiting to see if this progresses will be hard.

Thankfully there are no other denervation and reinnervation found which they tested left side and now right leg. The bulbar areas tested were Jaw, the side of my neck, and under my chin where I had to stick out my tongue. she then test the forehead to see if it looked similar the jaw abnormalities since that is where I receive Botox.

but again I know I have to wait for the doctors and trust in Jesus right now. I just know this is a place where people understand the test and the unknowns you go through for such terrible disease. I feel like everyone is just “oh it’s so rare, there is no way someone your age would get this”. But that’s sadly not always the case. Especially when test results are coming back concerning. Sorry for my rambling.
 

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You may need to vent elsewhere - please understand this forum is for people who are terminally ill. Some people you want to vent to and be reassured by are using their eyes to operate their computer and breathing with machines. Just work with your doctors, we can't do anything more.
 
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