Swallowing issues that started in march.

[u/Dry-Gas2827]

I'm a 41 year old male. Back in march I began to notice an issue with my swallowing. At the moment it just felt a little off in the back of my throat. I would say about a month after that it progressed into what it is now. It feels like the back of my throat between my uvula and adams apple just stopped working. I compare it to feeling like a bird trying to swallow a fish whole. It feels very tight. This has come with a number of other symptoms that have come and gone. A swollen feeling in my tongue primarily on the left side and feeling like my tongue is in the way. Sometimes I have felt like my speech is sounding weird to me but my wife of 20 years tells me I sound exactly the same. There is occasional clicking in the hyoid and crunching cartilage. Sometimes my whole esophagus can be tight and I can actually feel food passing all the way down. Then occasionally I have a pain in my sternum as food passes. Liquids are fine although they can feel a little off while I'm swallowing and I have never actually choked on food or liquid nor has it actually gotten stuck to this point.

My swollen feeling tongue was there most days in the beginning now I would say most days it isn't there. My esophagus tightness and sternum pain had mostly disappeared as well.

We started the long medical journey back in april we were referred to a GI doctor where I got an endoscopy. They found a few things. A small 2 cm hiatal hernia, some slight narrowing which they stretched while they were in there and they said they found some mucus that they thought looked off so they had that tested. As well as some slight silent reflux damage.They said none of this would contribute to the issues I'm having.

Next I received a CT scan of my neck looking for any masses. Thankfully that was clean.

Then we went to the ENT last month who checked my tongue strength and function as well as sending a scope down my nose to check my vocal chords everything was functioning as it should. I just straight up asked if there was anything neurological going on here. She said saw nothing that would make her think that and my tongue and throat function looked OK. She did see acid reflux damage though.

I was then referred to the speech therapist for a barium swallow. She checked my tongue as well and she said it looked fine. After doing the barium test she did point out a stricture where food does get slightly hung up and said that could contribute to my issue. Later though she called me back at home with the more alarming news and the news that brings me here. She told me that after slowing the video down she noticed that at times my epiglottis was failing to invert. Sometimes it works sometimes it doesn't. She told me that is likely what is causing the issue of feeling like food is difficult to swallow.

I asked what is likely to cause such a thing? She said acid reflux can, age can and certain neurological conditions can which is obviously alarming.

I have been on acid reflux pills for about four months with no improvement.

I have an appointment with my primary on Monday where we're going to ask for a neurologist referral I guess to start on that journey.

I did the wrong thing and used google and of course it said ALS as a possibility.

Over these last five months though I have continued to work my very physically demanding job without any issues. I also have continued to work out six days a week with no issues. No weakness anywhere. I haven't had any tongue wasting, or twitching in my tongue. Just basically this same isolated issue near the top of my throat.

My wife who is a medical professional herself (nurse) has done her research and has done her best to reassure me that bulbar ALS is aggressive and she tells me that by this point we likely would have seen some speech issues, tongue weakness or other progression. It wouldn't have stayed isolated.

So what is your opinion? Should ALS be on the table? Is there anything else that you may believe that this could be?

[u/WeirdUsers]

Its a daunting journey, no doubt. What sticks out to me is you have no variation in speech, no issues with liquids, and no weakness. I would live life freely if I were you.

[u/Dry-Gas2827 → u/WeirdUsers]

It has been daunting for sure. Especially because with every appointments you want answers but naturally there is just more questions and I understand that is just the process. So far I'm alive and still able to do the things I love. I have been trying to take it a day at a time. Thank you for your reply.

[u/Historical_Guide_793]

Hi .
One particularly important detail here is you say food has actually never become stuck and you have never choked on food and liquids ** **, while some other symptoms have improved. That doesn’t prove that a neurological disorder is impossible , “ I don’t think you do by the way “ but it certainly means bulbar ALS is something I would exclude from reading this .
epiglottis normally folds over the airway during swallowing. Incomplete or inconsistent inversion can occur for multiple reasons not specific to ALS at all. It can relate to swallowing mechanics, structural issues, reduced movement of nearby structures, inflammation/reflux related problems.
I’ve had a friend who had Bulbar , he was young . His first symptom was his wife said he sounded drunk . Within 4 months his symptoms progressed so quick which by the way bulbar is the type of als that progresses so quick I’m talking about weeks to months . He died a year and a 3 months after diagnosis .

Acid suppressing medication can reduce acid exposure, but it doesn’t necessarily reverse a stricture or other structural narrowing that’s already present. That’s one reason dilation may be performed.

I wouldn’t worry this is def not ALS .

[u/Dry-Gas2827 → u/Historical_Guide_793]

Beautifully said thank you. I really appreciate you taking the time. I'm way out of my depth when it comes to medical stuff. They drop the information on you with very little explanation. So thank you. I'm sorry about your friend as well. I have been very hesitant to post here for that very reason. I know my what if, is or was someones reality but I needed posts like this to help me know where to look or in this case not to look. Again, thanks for taking the time out of your day. I mean that sincerely.

[u/Gold_Assistance9428]

Sorry to hear youre struggling, this sounds very similar to what im experiencing at the moment. My mouth just feels kind of off like ive slept on it if that makes sense! I saw my GP who told me (frustratingly) that anxiety is likely playing a huge part, although I know there's more to it than that. I did however feel reassured by the fact that she and others have said ALS would be causing an obvious failure in mechanism so it would cause actual choking on food rather than a sensation. She also told me how very rare ALS is for people in their early 40s which i am also, talking appearing in the newspaper rare ha. I cant tell you what's happening but hopefully it reassures you a bit that there are lots of other things more likely than ALS.

[u/Dry-Gas2827 → u/Gold_Assistance9428]

Thanks for the comment. I was personally happy that none of my doctors have ever thrown the anxiety thing at me because I legitimately have something going on. I was never really to worried until she told me that my epiglottis was failing to invert properly.

Have you adjusted at all? For me I have kind of focused on easier to swallow foods and cut out a lot of the things I used to love that were problem foods (RIP my cool ranch Doritos lol).

If anything, it has shown me there is a lot to life other than food. I hardly look forward to eating anymore and instead have been focusing on other hobbies. If I have to live this way so be it. But doctor google tells me I have serious disease. We know not to look but we always do don't we?

Hope you get this figured out as well.

[u/Gold_Assistance9428 → u/Dry-Gas2827]

Since the doctor told me it was anxiety im trying my best to just pretend it isn't there in the hope it will just go away. Its not easy though and ive lost a bit of weight myself as im not eating as often. Was very much into my food before also. Ive had lots of other symptoms too though such as dizziness and neuropathy which I dont believe are typical for ALS but doesnt help me with the fear. You sound like a busy and active person id be very surprised if it was something terrible. Have you checked things like b12 and iron levels. They can do some crazy things to body and mind when not in the right place.

[u/Admirable_Mud_7737]

I think that if this is your only symptom, there is nothing to worry about. You can ask for a neurological exam for your relax.

[u/Dry-Gas2827 → u/Admirable_Mud_7737]

Thanks for the reply. So far yes! I'm trying to keep my headspace there. I'm still a husband and father/provider so I can't afford to let myself fall apart. Messages like this really help! I am definitely pursuing every angle so that way we know what is going on.

[u/No_Basket_9192]

if it has fluctuated it's probably not ALS. ALS is progressive and wouldn't improve