CWilson2
New member
- Joined
- Sep 18, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Thank you for taking the time to read this…
In March of this year I developed tongue fasciculations. At that time I was also having random muscle twitches and myoclonic jerks all over my body at rest. No limb weakness but feeling like I had to work harder at articulating my words - not all the time though. I sent a video of my tongue to a neurologist friend and the response was “Highly suspicious for ALS. Get EMG ASAP.”
I was able to get in with a neurologist. She was very dismissive and said that she would not do an EMG bc I did not have weakness anywhere. So I said ok let’s move on with my life…. Fast forward to August…
Tongue fasciculations persist- they are present all the time. And in August developed fasciculations all over my body. Started in the left foot but I have them everywhere. And it is constant any time I am at rest. In addition I started having issues with speaking. I don’t know if it is laryngospasm but it feels like I’m choking while speaking at times and have to clear my throat. I saw an ENT and the laryngoscopy showed that my vocal cords do not completely close on phonation. Referral to see another specialist was placed. Symptoms seem to be progressing…. My voice is hoarse all of the time now. Also I find that I need to take more time to chew my food and I have had a few episodes of near choking. I am concerned about Bulbar Onset ALS.
In March of this year I developed tongue fasciculations. At that time I was also having random muscle twitches and myoclonic jerks all over my body at rest. No limb weakness but feeling like I had to work harder at articulating my words - not all the time though. I sent a video of my tongue to a neurologist friend and the response was “Highly suspicious for ALS. Get EMG ASAP.”
I was able to get in with a neurologist. She was very dismissive and said that she would not do an EMG bc I did not have weakness anywhere. So I said ok let’s move on with my life…. Fast forward to August…
Tongue fasciculations persist- they are present all the time. And in August developed fasciculations all over my body. Started in the left foot but I have them everywhere. And it is constant any time I am at rest. In addition I started having issues with speaking. I don’t know if it is laryngospasm but it feels like I’m choking while speaking at times and have to clear my throat. I saw an ENT and the laryngoscopy showed that my vocal cords do not completely close on phonation. Referral to see another specialist was placed. Symptoms seem to be progressing…. My voice is hoarse all of the time now. Also I find that I need to take more time to chew my food and I have had a few episodes of near choking. I am concerned about Bulbar Onset ALS.
