26 years old with 4 years of twitching and new swallowing issues

[Torva]

Hello all I'm new to this forum. I'm a 26 year old male and I've been twitching for the last 4 years or so. It all started shortly after gallbladder surgery in the summer of 2020. When I first started twitching I thought it was odd and then when it didn't go away I got nervous. I didn't know what ALS was at this time before I started googling muscle twitches. My twitches started getting worse and soon became widespread. They're constantly firing off in my calves and my sole of my feet and then randomly happen everywhere else.

I went to a neurologist within like 5 weeks and got an EMG which came back clear he told me we will keep an eye on this and so off I went. After 6 months I got another one which was still normal except some carpal tunnel. This made sense this I've used computers my whole life.

So now we fast-forward to my last EMG which was about 1-1.5 years into twitching. This EMG came back as carpal tunnel too. My neurologist informed me that there's no way I have ALS and told me he will not be doing anymore EMGs. That was about 3 years ago now and here I sit. The last 6 months to a year I've had progressive swallowing difficulties which is making me take ages to eat my meals. Still I am twitching more then ever but instead of just twitching I have muscle shaking. My back will shake if I sit certain ways my leg will shake etc.

I underwent a Modified Barium Swallow the other day which said I have reduced epiglottis inversion and trace stasis post swallow. I also have trace stasis upon cricopharyngeal closing. Basically this means my muscles are not working correctly when I'm swallowing according to some research I've done. I've lost about 7 pounds in a few weeks recently and everything feels like its getting worse. This has all been very overwhelming to say the least and usually I had a little doubt that I can actually have ALS but now there is no doubt.

Not sure what to do now other then wait for swallow study follow up then go from there. Nearly choking every time I eat and its scary stuff. Liquids have been causing nasal regurgitation too which started weirdly the night after the MBS. I've had tingling and numbness of my arms and legs and all that too. The SLP at my swallow study told me she doesn't think its neuromuscular but then why when I search her diagnosis it says it could be?

The only hope I currently have is that this is just LPR/GERD since I've had it since getting my gallbladder out. Only thing is my recent GERD tests show my reflux is well under control so there's no reason for such an abrupt swallowing issue. Its been progressively getting worse and I've just been so depressed over it and I think its over for me. Would appreciate some input.

 

[lgelb]

Who ordered the barium swallow and what is their care plan from here?

What treatment did you get for the carpal tunnel?

In short, there are probably things that should be happening that are not, but you're off on some other path here.

Reflux is not the only cause of swallowing issues, nor is ALS. There is a lot of territory in between, and it doesn't like you've even gotten to allergies.

Shaking likewise has thousands of causes, including your own fearful mind and poor diet. Fearful mind is a leading possibility given the timing you've mentioned, though a barium swallow can certainly cause its own hyperawareness. Give yourself time to get past that.

There is zero point in second-guessing what could be related to what, if you believe that the neuro and SLP know a bit more than you relative to ALS. A "no doubt" in your mind position therefore has no basis and there is really nothing more to say.

Since you are depressed, losing weight, and clearly have an unfounded fear, my input is, find a good counselor for this health anxiety, follow up with the neuro and SLP if they suggest further tests/ treatment, and try to proceed from the assumption that you can feel better instead of thinking "it's over." PALS here have the unfortunate right to make that statement at some point, but you do not.

 

[Torva]

I appreciate the reply just been so stressed about this. Sorry for the doom and gloom comments. Just been dealing with these symptoms and feel so lost. The anxiety is something I've tried to control via medications and such. Nothing seems to stick and get rid of it though. also the ENT ordered the barium swallow and I got PT for carpal tunnel syndrome but I'm a gamer so its kinda like a chronic thing. Care plan for the swallowing is most likely the FEES test and go from there. I'm all loaded up on acid reducers too so its just a mess.