Nonduality
New member
- Joined
- Mar 3, 2022
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi everyone, 30 male.
(prev threads here and here)
I've been twitching for 2.5 years. My GF also started twitching a month after me. Full body fasics including tongue.
It started about a month post our covid infection. I'm 2.5 years in.
The twitching bothered me at first, but not anymore. I now get maybe 10-20 twitches on a bad day, 5-10 on a good day, at the start it was 100+ a day for the first few months.
6 months in I noticed my tongue would get tired when eating certain foods to the point where I'd have to take a break or just swallow. The past 6 months I've had lung and throat issues. I got a little bit of a cough in vegas, 1 month later on the 4th after smoke exposure i had bloody sputum.
It resolved and came back 2 months later after that first episode. I woke up one morning 3 months ago with heart palpitations, diahrea, and bloody sputum. The night before it happened I remember drinking 2 beers, woke up middle of night and chugged water while basically laying down very fast. Went to ER and they said norovirus, but everything else normal. 3 months before that they said bronchitis on my first episode of bloody sputum. I think aspiration + smoke made it worse, but mostly think chronic aspiration is chronically inflaming my lungs.
Around 3 months ago I noticed throat tightness when swallowing foods, like the muscle felt like it was about to get pulled, my voice was getting slightly hoarse. So I saw 3 ENTs, one was a throat specialist who used a probe light and saw L vocal chord paresis, said it was mildly weaker than right. Then I did a modified barium swallow, showed slightly more concerning weakness on the left side as whatever I swallow goes to my left as its not strong enough to push the foods/liquids to the center. The ENTs also saw mucus in throat saying could be due to weak swallowing. They say no notable aspiration but can't gaurentee it as MBS test can miss it sometimes.
I clear my throat a lot after drinking thin liquids, a few instances of light coughing but rarely. Now my throat muscles ache, my vocal chords just feel very sore when I talk. I do not have slurred speech, but my voice has become quite hoarse. I can swallow normal foods fine.
I also get chest pain, rib pain, upper back pain for short periods recently - and after these pains I taste blood and my bloody sputum is increased. I assume I'm aspirating either silently or subtly and it's causing aspiration pneumonia (the kind that isn't an infection but just irritates your lung) since I have not had fevers from it.
I've had 1 EMG by a neurologist who specializes in movement discords 1 year ago. Multiple clinicals by neuros. I know I need to see a neuromuscular specialist and will do so ASAP. I have seen cardiologist for chest pain, says it's definitely not my heart. Pulmonologist says my CTS just show micronodules and evidence of past bronchitis/mild bronchial thickening. Rheum tests all normal except nonspecific ANA titer very elevated.
Everyday my chest issues get worse, bloody sputum daily for 4 months. Irritated/rough chest feeling, sharp pains in mid-chest, back, ribs occasionally. Chest pressure daily, worse when laying down. When I talk quietly by voice completely cuts out, when i talk loud it just strains my vocal chords and is just painful. ENT and SLP just shrug shoulders saying not sure what's causing it.
Been over a year since last EMG, going to get another one on bulbar+limbs by neuromuscular and if it comes out clean somehow I"ll move on from ALS but need to figure out what's causing me to spit up blood and have these chest and throat issues. I also had endoscopy/colonoscopy which found ectopic gastric mucosa upper third of esophagus, says doesnt explain bloody sputum.
I also have pulsatile tinnitus and tinnitus and my left ear feels blocked. It clicks when i swallow. I read this could be eustachian tube dysfunction which is another symptom of MND. Al though I'm aware it can be many other things but it started after twitching and never got better, on my left side which is the same side my throat is weak.
I know I sound crazy, but my tests and symptoms are undeniable something is wrong. My muscles tire out much faster, I can still do pushups, carry heavy stuff, but things just tire/fatigue much quicker. My limbs also fall asleep much faster.
I know this isn't typical and bulbar usually would have some speech involvement like slurred speech, I also know it progresses faster typically. Just feeling like this possibly may be an atypical presentation of it as I'm younger.
This also may sound crazy but I have spent sometime on the BFS subreddit, longcovid as well - and have seen a lot of muscular and twitching issues posted. That as well as my GF having twitching is leading me to believe covid has may be caused some form of a motor neuron disease with a different presentation. Highly speculative I know.
(prev threads here and here)
I've been twitching for 2.5 years. My GF also started twitching a month after me. Full body fasics including tongue.
It started about a month post our covid infection. I'm 2.5 years in.
The twitching bothered me at first, but not anymore. I now get maybe 10-20 twitches on a bad day, 5-10 on a good day, at the start it was 100+ a day for the first few months.
6 months in I noticed my tongue would get tired when eating certain foods to the point where I'd have to take a break or just swallow. The past 6 months I've had lung and throat issues. I got a little bit of a cough in vegas, 1 month later on the 4th after smoke exposure i had bloody sputum.
It resolved and came back 2 months later after that first episode. I woke up one morning 3 months ago with heart palpitations, diahrea, and bloody sputum. The night before it happened I remember drinking 2 beers, woke up middle of night and chugged water while basically laying down very fast. Went to ER and they said norovirus, but everything else normal. 3 months before that they said bronchitis on my first episode of bloody sputum. I think aspiration + smoke made it worse, but mostly think chronic aspiration is chronically inflaming my lungs.
Around 3 months ago I noticed throat tightness when swallowing foods, like the muscle felt like it was about to get pulled, my voice was getting slightly hoarse. So I saw 3 ENTs, one was a throat specialist who used a probe light and saw L vocal chord paresis, said it was mildly weaker than right. Then I did a modified barium swallow, showed slightly more concerning weakness on the left side as whatever I swallow goes to my left as its not strong enough to push the foods/liquids to the center. The ENTs also saw mucus in throat saying could be due to weak swallowing. They say no notable aspiration but can't gaurentee it as MBS test can miss it sometimes.
I clear my throat a lot after drinking thin liquids, a few instances of light coughing but rarely. Now my throat muscles ache, my vocal chords just feel very sore when I talk. I do not have slurred speech, but my voice has become quite hoarse. I can swallow normal foods fine.
I also get chest pain, rib pain, upper back pain for short periods recently - and after these pains I taste blood and my bloody sputum is increased. I assume I'm aspirating either silently or subtly and it's causing aspiration pneumonia (the kind that isn't an infection but just irritates your lung) since I have not had fevers from it.
I've had 1 EMG by a neurologist who specializes in movement discords 1 year ago. Multiple clinicals by neuros. I know I need to see a neuromuscular specialist and will do so ASAP. I have seen cardiologist for chest pain, says it's definitely not my heart. Pulmonologist says my CTS just show micronodules and evidence of past bronchitis/mild bronchial thickening. Rheum tests all normal except nonspecific ANA titer very elevated.
Everyday my chest issues get worse, bloody sputum daily for 4 months. Irritated/rough chest feeling, sharp pains in mid-chest, back, ribs occasionally. Chest pressure daily, worse when laying down. When I talk quietly by voice completely cuts out, when i talk loud it just strains my vocal chords and is just painful. ENT and SLP just shrug shoulders saying not sure what's causing it.
Been over a year since last EMG, going to get another one on bulbar+limbs by neuromuscular and if it comes out clean somehow I"ll move on from ALS but need to figure out what's causing me to spit up blood and have these chest and throat issues. I also had endoscopy/colonoscopy which found ectopic gastric mucosa upper third of esophagus, says doesnt explain bloody sputum.
I also have pulsatile tinnitus and tinnitus and my left ear feels blocked. It clicks when i swallow. I read this could be eustachian tube dysfunction which is another symptom of MND. Al though I'm aware it can be many other things but it started after twitching and never got better, on my left side which is the same side my throat is weak.
I know I sound crazy, but my tests and symptoms are undeniable something is wrong. My muscles tire out much faster, I can still do pushups, carry heavy stuff, but things just tire/fatigue much quicker. My limbs also fall asleep much faster.
I know this isn't typical and bulbar usually would have some speech involvement like slurred speech, I also know it progresses faster typically. Just feeling like this possibly may be an atypical presentation of it as I'm younger.
This also may sound crazy but I have spent sometime on the BFS subreddit, longcovid as well - and have seen a lot of muscular and twitching issues posted. That as well as my GF having twitching is leading me to believe covid has may be caused some form of a motor neuron disease with a different presentation. Highly speculative I know.
Last edited by a moderator:
