Hello again,
My previous thread is here: Pain in the esophagus, lump in the throat
I hope you’ll allow me to share a small update, though unfortunately, things haven’t improved.
(I’m not sure if I can update this thread; I have no intention of breaking the rules, but my previous thread is closed. Please don’t ban me.)
The biggest issue I’m dealing with now is with my esophagus and throat. My earlier symptoms haven’t gone away; in fact, they’ve worsened. I feel significant discomfort while swallowing and even greater discomfort when lying down or trying to sleep. Often, it takes me hours to fall asleep. I particularly feel discomfort on the left side of my esophagus. When I swallow, I often feel clicking or shifting sensations in that area. When lying down, it feels like my esophagus is misaligned or hanging, and I feel pressure in that spot.
The side I lie on makes a difference: lying on my left side causes a strong pressure on the left side of the esophagus, while lying on my right side reduces the pressure. However, when swallowing saliva, I can hear and feel cartilage clicking or shifting.
My tongue also seems smaller (flatter) on the left side at rest compared to the right side (when extended or tensed, I don’t notice a difference). Additionally, the left side of my tongue feels stiffer. I constantly clear my throat and sometimes cough due to a sensation of something building up in my throat. (I have reflux, but I’m unsure if this is related.)
My palatine arches and uvula are noticeably lower than before (confirmed by an ENT specialist). The arches are more “hanging,” and my uvula is long, touching the back of my tongue, making breathing harder when lying down. Sometimes it feels like I can’t get enough air and need to take another breath, which usually helps. I haven’t noticed problems with speaking, and I can swallow relatively normally. Occasionally, I need to concentrate more or repeat the swallowing reflex for saliva, but I don’t have issues swallowing food or liquids. I’ve observed occasional fasciculations on my tongue (visible in the mirror but not felt).
Limbs - I haven’t noticed a loss of strength in recent months. However, over the past few years, my arms and legs have become very thin, and my joints are loose and often make cracking sounds. Recently, I’ve experienced migrating muscle pain and strange sensations, as if my muscles were being stretched or pulled, especially in my feet.
My left leg is the most problematic. For months, I’ve felt increasing discomfort in the lower part of my left calf and near the shinbone close to my foot. This discomfort includes pain, burning, and stinging, often triggered by exertion but also present at rest.
Since May 2024, I’ve had fasciculations all over my body (mainly in the calves). Initially, they were very frequent (every second), but now they occur a few times an hour in various places or sometimes disappear for several hours. Unfortunately, I’ve noticed that fasciculations now often occur after mild exertion or muscle movement. For example, when I tense my left bicep, it sometimes triggers temporary fasciculations in that muscle. This didn’t happen before.
My throat issues began in early September 2024. That same month, I underwent an EMG (results are in my previous post). I’ve seen several ENT specialists. They found nothing significant, just slight redness in the throat and epiglottis, likely due to reflux.
In less than two months, I have an appointment with the neurologist who conducted my EMG. They will likely recheck my reflexes and may schedule another EMG.
My Questions:
1. Could the symptoms I’ve described be the start of bulbar-onset ALS? I know it typically begins with speech and swallowing issues, but my symptoms seem somewhat different.
2. During my EMG, only my tongue (left side) was tested. The submental muscles and the sternocleidomastoid muscle were not tested. Can I trust the EMG from September and assume the bulbar region isn’t affected? If not, how else can bulbar-onset ALS be confirmed?
3. In the early stages of ALS, can muscle tension trigger fasciculations, or are fasciculations usually spontaneous and at rest?
4. I’m turning 40 in less than a month. How common is ALS at this age, and how often does bulbar-onset ALS occur in people this young?
My previous thread is here: Pain in the esophagus, lump in the throat
I hope you’ll allow me to share a small update, though unfortunately, things haven’t improved.
(I’m not sure if I can update this thread; I have no intention of breaking the rules, but my previous thread is closed. Please don’t ban me.)
The biggest issue I’m dealing with now is with my esophagus and throat. My earlier symptoms haven’t gone away; in fact, they’ve worsened. I feel significant discomfort while swallowing and even greater discomfort when lying down or trying to sleep. Often, it takes me hours to fall asleep. I particularly feel discomfort on the left side of my esophagus. When I swallow, I often feel clicking or shifting sensations in that area. When lying down, it feels like my esophagus is misaligned or hanging, and I feel pressure in that spot.
The side I lie on makes a difference: lying on my left side causes a strong pressure on the left side of the esophagus, while lying on my right side reduces the pressure. However, when swallowing saliva, I can hear and feel cartilage clicking or shifting.
My tongue also seems smaller (flatter) on the left side at rest compared to the right side (when extended or tensed, I don’t notice a difference). Additionally, the left side of my tongue feels stiffer. I constantly clear my throat and sometimes cough due to a sensation of something building up in my throat. (I have reflux, but I’m unsure if this is related.)
My palatine arches and uvula are noticeably lower than before (confirmed by an ENT specialist). The arches are more “hanging,” and my uvula is long, touching the back of my tongue, making breathing harder when lying down. Sometimes it feels like I can’t get enough air and need to take another breath, which usually helps. I haven’t noticed problems with speaking, and I can swallow relatively normally. Occasionally, I need to concentrate more or repeat the swallowing reflex for saliva, but I don’t have issues swallowing food or liquids. I’ve observed occasional fasciculations on my tongue (visible in the mirror but not felt).
Limbs - I haven’t noticed a loss of strength in recent months. However, over the past few years, my arms and legs have become very thin, and my joints are loose and often make cracking sounds. Recently, I’ve experienced migrating muscle pain and strange sensations, as if my muscles were being stretched or pulled, especially in my feet.
My left leg is the most problematic. For months, I’ve felt increasing discomfort in the lower part of my left calf and near the shinbone close to my foot. This discomfort includes pain, burning, and stinging, often triggered by exertion but also present at rest.
Since May 2024, I’ve had fasciculations all over my body (mainly in the calves). Initially, they were very frequent (every second), but now they occur a few times an hour in various places or sometimes disappear for several hours. Unfortunately, I’ve noticed that fasciculations now often occur after mild exertion or muscle movement. For example, when I tense my left bicep, it sometimes triggers temporary fasciculations in that muscle. This didn’t happen before.
My throat issues began in early September 2024. That same month, I underwent an EMG (results are in my previous post). I’ve seen several ENT specialists. They found nothing significant, just slight redness in the throat and epiglottis, likely due to reflux.
In less than two months, I have an appointment with the neurologist who conducted my EMG. They will likely recheck my reflexes and may schedule another EMG.
My Questions:
1. Could the symptoms I’ve described be the start of bulbar-onset ALS? I know it typically begins with speech and swallowing issues, but my symptoms seem somewhat different.
2. During my EMG, only my tongue (left side) was tested. The submental muscles and the sternocleidomastoid muscle were not tested. Can I trust the EMG from September and assume the bulbar region isn’t affected? If not, how else can bulbar-onset ALS be confirmed?
3. In the early stages of ALS, can muscle tension trigger fasciculations, or are fasciculations usually spontaneous and at rest?
4. I’m turning 40 in less than a month. How common is ALS at this age, and how often does bulbar-onset ALS occur in people this young?
