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.