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scdsco

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I'm a 19 year old male worried about bulbar ALS, to the point where I can't enjoy my life anymore. I've been to my primary doctor about it but not a neurologist yet. He didn't seem to be worried about it. I've had an MRI and that was normal.

I've been having sleep apnea for almost a year and read that was a symptom of ALS. Then about a month ago my throat muscles (the front part of my neck) became very tight and twitchy. That went away after about a week and my doctor attributed it to stress. Following that I started having episodes at night where I suddenly would not be able to initiate a swallow, it felt like my muscles completely froze up/stopped working and I'd have to take a deep breath and relax in order to swallow again. This only seems to happen at night and only when I'm swallowing spit, NOT with food or drink. I can generally get those down fine other than the occasional crumb of food getting stuck in the back of my throat.

My doctor believes I have laryngeal reflux and that's what's causing much of this in addition to stress. However, the past week or so I have even more symptoms that are bothering me. First of all I have been slurring words here and there, mostly the letter "s" like people with lisps do. When I make the "s" sound my tongue slips in front of my teeth so it ends up sounding more like a "th" or "sh". It kind of feels like I have to make more of an effort to talk, but my family members haven't noticed much slurring.

I've recently started on an anxiety med that can cause problems with mouth and throat muscles as a side effect, but online it says those side effects usually only begin after months of taking it. I'm trying to tell myself it could be a lot of things causing this but my ALS fear keeps returning. I've stuck out my tongue in the mirror and it was shaky a little bit at the end.

I'm also worried about the sleep apnea since online it says ALS is one of the things that causes that and I can't figure out anything else that could be causing it.
 
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lgelb

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Um, are you treating the [clinically diagnosed?] sleep apnea (as in, with CPAP) or just obsessing about a very long walk over to ALS? Anti-anxiety meds can make it worse, BTW.

If you have sleep apnea that is not being treated or not being adequately treated, it can cause every symptom that you listed. And while there are things that make it more likely, like obesity, most people don't have a definitive "cause" for it, so don't expect one.

Nothing you have said suggests ALS.

Best,
Laurie
 

scdsco

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Thank you very much for your reply. Should I be worried about the slurred speech or difficulty swallowing? I will sometimes skip consonants entirely, for example saying "aright" rather than "alright" or "I own know" instead of "I don't know." Also, is a quivering tongue something to be worried about? I've seen varying answers to that question, with some saying tongue fasciculations are usually benign, and others saying that ALS is the only thing that causes tongue fasciculations..
 

ShiftKicker

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I will direct you to this pinned thread: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

Just like coughs don't immediately indicate lung cancer, twitches don't indicate ALS. Anxiety meds affect the central nervous system. They change your brain chemistry and cause all sorts of CNS disturbances and odd symptoms. As Laurie has said above, un(or under)treated sleep apnea and a medication that mediates brain activity are likely culprits.

Please understand your symptoms, despite what you may think or assume, do not show a pattern that states ALS. Continuing to post here instead of seeking help for your already diagnosed issues will net you no agreement that you have ALS. If you are not reassured by the replies you have already received, please visit with your doctor again and talk to them about your concerns.
 

scdsco

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Thank you very much for taking the time to respond. I will be doing a sleep study soon to officially diagnose the sleep apnea, get an idea what's causing it andbegin treatment. And I will talk to my doctor and med specialist just to make sure these symptoms can be explained away by the meds and aren't cause for concern.
 

scdsco

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What aside from ALS can cause slurred speech, swallowing difficulty and tongue spasm?

Are there other things that can mimic this group of symptoms or is having all three indicative of motor neuron damage? I'm 19 years old and male and I posted on here recently but I'm of course still worried (the ALS paranoia has a way of crawling back again and again) and now I'm just wondering what could mimic these symptoms. My brain has a hard time believing it's not ALS unless there's something else that could be causing these symptoms
 

ShiftKicker

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Mod note: merged threads. Please keep posting in your original thread. It helps members see all the information you have posted in order to help them provide you the most informed answers.

I refer you to the "READ BEFORE POSTING" link provided above. There is a list in it of differential diagnoses. Many of which cause a variety of symptoms similar to MND.

The best thing to do is to actually ask a doctor in person so they can examine you and provide more information based on that examination. This really isn't a general health or health anxiety forum- it's specific to ALS. Please seek proper medical help.
 

scdsco

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Update on bulbar ALS anxiety

I went to my primary doctor about my symptoms (slurred speech, tongue spasms, toe spasms, etc.) to ask if he could refer me to a neurologist. He said he believed my symptoms were brought on by stress, because if it were bulbar ALS, the symptoms would've gotten a lot worse since I first started having them two months ago. He said he couldn't rule out ALS without tests but he didn't feel like I needed to be tested right now. My reflexes seemed to be normal, and since my slurred speech came and went he said that wasn't concerning to him. So obviously I have a lot of feelings about this. I'm very relieved to be told I probably don't have this, but I've been told that a hundred times before, and my anxiety still won't let me believe it. I went in there today intending to demand a neurologist's assessment, because I believe that's the only thing that will permanently quell my anxiety/obsession with ALS. I also have a sleep study in a week to figure out if I have sleep apnea, what kind I have and how that factors into all of this. So many thanks to the lovely people on this forum who take time to humour anxious young people like me even though they have much better things to do. I am wondering what you all think about what the doctor said and whether ALS can truly be ruled out at this stage. Thank you.
 

lgelb

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Re: Update on bulbar ALS anxiety

Symptoms that come and go don't carry much weight toward suggesting a relentlessly progressive disease, to be sure. And that's a good thing for you.

As long as you can still do what you used to, there's little reason for concern about these diffuse issues, so I'd await the sleep study results and go from there.
 
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