Bulbar ALS Fears

Hello All,

I’ve posted here a few times before regarding my concerns and symptoms but lately things have been getting out of hand.

December of 2020 I began to notice shortness of breath during exertion. I didn’t think to much of it at the time but it feels like my lung capacity is half of what it use to be. Then in March of 2021 I started developing trouble swallowing. To be more specific it feels like the left side of my tongue is no longer functioning and food will just sit there instead of being pushed to the back of my mouth. During this time I saw an ENT who examined me and said nothing appeared to be abnormal about my throat and that it could possiblely be reflux(he noted a little inflammation) During this time I started to read up about Bulbar ALS and began to become concerned.

During the next couple months I saw multiple providers in the primary care setting who all examined me but could not determine why I was have issues with my tongue and swallowing. Finally in July of 2021 I saw the neurologist.

During my neurology visit I saw a resident neuro student and had a brief consultation with the students attending physician/Boss. I received a cranial nerve exam as well as a typical neuro work up. Nothing was discovered and I was informed this was most likely anxiety.

A couple weeks later I developed what felt like nasal regurgitation in conjunction with my already existing swallowing issues as well as a ton of saliva in my mouth. My voice also became horse feeling like the hoarseness was originating from the same side of my mouth as the side with the swallowing/tounge issue. I saw another Ent towards the beginning of August 2021 who scoped me and said he didn’t suspect a neurological issue and ordered a modified barium swallow just to be sure.

I received the barium swallow in August of 2021 which came back normal and was advised by a speech pathologist that this was most likely muscle tension related.

During October 2021 I began to notice my voice would cut out when I spoke and I was beginning to slurr when I spoke. Had an additional follow up with a neurologist in November 2021 same resident as before who did not appreciate any changes in my voice. My neuro exam was also clean.

During this time, I began to self exam. Noticed my tounge would twitch while protruded and very slightly at rest and my uvula is also deviated slightly to the left. Had an additional follow up with neuro in feb of 2022. This exam was also clean.

I am still having all these issues. All of which are symptoms of Bulbar ALS and everyone is telling me I’m fine. Am I losing my mind. It’s been about a year and a half and I feel like I’m still getting worse with no answers. Could it really all just be anxiety? My tongue definitely is not participating in my swallow the way it use to. I am so terrified and am loosing my mind.

28 male.

Quote:

---

Originally Posted by Dcf93

December of 2020...I saw an ENT who examined me and said nothing appeared to be abnormal about my throat and that it could possiblely be reflux(he noted a little inflammation)

July of 2021 I saw the neurologist. During my neurology visit I saw a resident neuro student and had a brief consultation with the students attending physician/Boss. I received a cranial nerve exam as well as a typical neuro work up. Nothing was discovered and I was informed this was most likely anxiety.

I saw another Ent towards the beginning of August 2021 who scoped me and said he didn’t suspect a neurological issue and ordered a modified barium swallow just to be sure.

I received the barium swallow in August of 2021 which came back normal and was advised by a speech pathologist that this was most likely muscle tension related.

Had an additional follow up with a neurologist in November 2021 same resident as before who did not appreciate any changes in my voice. My neuro exam was also clean.

Had an additional follow up with neuro in feb of 2022. This exam was also clean.

Could it really all just be anxiety?

---

I highlighted the answer.

FMP

To specifically answer your question, dysphagia (swallowing issues) and dysphonia (hoarseness) can both be caused by reflux (either GERD or LPR) or by muscle tension. If you have access to an ENT who specializes in laryngeal evaluations, I would absolutely follow up with then, as muscle tension in the larynx / pharynx is not nothing -- even though it is NOT -- I repeat NOT -- a fatal disease.

Why do I say you should bother to follow up? Because while it won't kill you, it WILL make you miserable, and the more you think about it, the worse it will get.

FWIW, though, I had a periodically really severe (Think: having to emergency excuse myself to a bathroom IMMEDIATELY in restaurants, my future in-laws' house, during professional functions where there was food, etc. because something I had eaten had become 100% lodged just below my larynx and I could neither cough/vomit it up or get it to go down. During these episodes I couldn't even swallow mucous, it would pour from my mouth continuously as my body desperately tried to send more saliva to get the bolus down.) This was a VERY obvious muscular swallowing issue. It started at age 20 and lasting until about age 30, and it was 100% reflux + muscle tension related. Thank GOD I didn't know about bulbar ALS at that time or I know I would have lost my wits. As it was I spent a ridiculous amount of time and anxiety worrying it'd happen at any given moment, with the result that it happened a lot. Have you ever had to excuse yourself to a bathroom in the middle of a invite-only networking event at Harvard to try to dislodge a canape that's left you unable to speak or swallow and is causing incontrollable drool?! If not, count yourself lucky. And that was a so-called "BENIGN" issue!!

How did I fix it? I drank more water and less coffee/non-herbal tea. I calmed down a bunch. I stopped eating after 9pm. I chewed my food more. And I learned some stretches that stopped the spasms.


All this said, I am now a decade or so older than you and I am ALSO STILL worried about bulbar, because in my case I have at least one really weak set of cranial-nerve innervated muscles; my tongue also twitches; and I feel my speech has changed. And yet I too know it's exceedingly unlikley. So unlikely that it may not even be worth worrying about.

Anyway, all best luck to you, but really -- if you can afford it and you have the right type of expertise nearby or within network for telehealth, consider an ENT who knows voice and swallowing stuff really well. You don't need to suffer like this.

-kyllikkI- Thank you so much for your thoughtful reply, made me feel a bit better. I just get worried because the symptoms are always present. I understand that ALS is very rare, and Bulbar ALS is even rarer, especially for a 28 year old male. I saw an ENT last summer who diagnosed me with functional dysphagia but did not recommend a treatment approach. Apparently speech therapy often makes that particular condition worse. I actually trust him a lot more than the neurology team I saw because he has 20 years experience and has very good reviews /reputation.

I have suffered from OCD for many years which makes me hyper aware of every little sensation in my body. Which totally doesn’t help. Not to mention I’ve probably spent hundreds of hours reading about Bulbar ALS. Having a smart phone has destroyed my life.

I realize that the chances of this being Bulbar are very low especially since it’s been 20 months since these symptoms have started and no one has found anything. I just can’t get the idea out of my head that I am that rare example that they are going to write a case study about :/

Dcf93, I have the EXACT same ideation as you. The the letter. Except I am a decade older and I know exactly how my speech should work because I used to teach public speaking. And something is wrong. That plus body wide twitching and now tongue twitching is not promising, you know? And yet a MND specialist looked me in the eyes a few weeks ago and said "I do not think you have MND" -- noted full neck strength, normal tongue movements. So who knows. Either it is all in my head or I will leave my small child motherless. What a flip of the coin!