lingua
New member
- Joined
- Jul 6, 2023
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello, all!
I want to start by thanking you all for your time and consideration. I've followed the forum for about a month now and I want to be sure to be adequately respectful of whatever help/advice you can give me. That you're willing to field concerns like this at all is truly generous and I appreciate it. I've read all of the stickies and done my best to try and talk myself out of asking before my EMG, but I can't seem to help it at this point.
I am a 32-year-old man who has no family history of neurological/neuromuscular issues. Before my symptoms started, I was a rather typical guy who had made some great changes. Lost 115 pounds in a year through exercise and diet changes. Strength training 5x a week and daily 5-mile walks. I'd never been healthier in my life. Around three months ago, I sustained a grade 3 calf tear in my right leg and had been getting consistent physical therapy, but recovery was going great. Then, a month ago, I had some sort of strange episode.
On 6/11, while out on a walk with a friend, my tongue started moving on its own. Thrashing around in my mouth, squeezing and then releasing, pushing up against my teeth or even out past my lips on occasion. My jaw moved involuntarily as well, popping from side to side and jutting forward.
I had never experienced anything of the sort before, so I asked my friend to take me to the ER. While there, the doctor admitted that he'd never seen anything of the sort before. He did a CT scan of my stomach (I was experiencing pain there), which came back completely clear. They gave me some Benadryl which lulled me to sleep and then sent me home with instructions to follow up with a neurologist.
The next day (6/12), I experienced similar movement all day long, though less violently than it had first set in. By the end of the day, however, it had grown completely wild again and I, in a panic, went back to the Emergency Room where they tested me for blood clots and did a CT of my head. The tests they ran came back clear and the doctor suggested I may have some kind of movement disorder, though he is no neurologist and admitted as much. Once again, I went home with only questions which led me to Google. A mistake, in retrospect, but involuntary tongue and jaw motion that doesn't stop seemed a scary enough symptom for me to risk the gander. I wish I hadn't.
In the weeks since, I've developed a shaky sense of balance and my fingers are clumsy and uncoordinated. My muscles feel slow and occasionally "sticky", particularly in my hands. I'm a singer by trade and I've noticed that there are spots of my voice that are scratchy and more difficult to support/sustain since this started, not to mention the hell it is to try and maintain proper mouth posture with my tongue moving so much. As of yet, I can still sing and make a decent sound, but it's not anywhere near what I could do before this all started a month ago.
I go through bouts of heavy sweating at night, sometimes waking up completely soaked through and I have brain fog constantly. I've also gone through a few rounds of extreme fatigue, the likes of which showed me that I had previously not understood at all how fatigued a person could feel. The third of these rounds had me so tired and weak that I had to go back to the ER where I could barely walk unassisted and couldn't even hardly keep my head up.
While at the ER for the third time (6/18), they rushed me to a bigger hospital by ambulance so I could be admitted to the neuro ward. The doctors there took great care of me, running every imaginable test including an astonishing number of blood tests, MRIs of my brain and cervical spine, and a lumbar puncture.
The neurologist at the hospital was absolutely amazing and did serious research as well as assure me that in his many years of neurological practice, after having worked with "dozens and dozens" of patients who ended up being diagnosed with ALS, he felt like my chances of having it with my symptom presentation, age, and the clinical tests he ran with me were "about as good as [his] chances of winning the powerball." He reassured me over and over that I'd be a study in a unique presentation of the disease in neurology journals and that he was far more concerned about neurotoxicity or an infection in the spine.
I was in the hospital for four days and none of the tests came back positive at all. The MRIs were completely clean, the only abnormality in the blood tests he found was a low-normal B12 number, but he insisted that it was nowhere near low enough to be causing the issues I have. He checked me for fasciculations throughout my body and didn't see any. He said my tongue looked to him to be more tremulous or even "undulating", given how rigorous the movement was and how shaky my tongue is when I stick it out. I've never taken anti-psychotics, so the motion cannot be tardive dyskinesia, but it's what he would've guessed.
In the end, he apologized that he couldn't order and perform an EMG (this hospital doesn't offer that test except for as a clinical, outpatient service) because he wanted to be able to "close the door" on my anxiety about ALS, but referred me to a neuromuscular specialist who was supposed to get me in for the EMG/NCS within the week.
The only other strange thing that came back was during my barium swallow test. The speech expert who ran the test said that my swallow action is "perfect" and completely normal, but my tongue "fasciculates" (she seemed adamant that it was not tremor based on the action she witnessed during the x-ray), which causes whatever I'm eating or drinking to shake on my tongue and not form into a proper bolus for swallowing.
She says there is no residue anywhere and my swallow is, again, exactly what it ought to be other than the fact that my tongue keeps what I'm consuming from being shaped properly. She has no idea what could be causing that, but suggested making sure everything was chewed adequately and keeping an eye on things.
The neuromuscular guy who was meant to meet with me for the EMG read over my file and said that I'm not urgent enough to meet with within the next week, scheduling me for August 22nd. I found out that he doesn't do bulbar tests, however, so I kept a previously made appointment (7/12) with a neurologist in my area who can, hopefully, refer me to a doctor who does perform a bulbar test. My tongue continues to move constantly, occasionally working up to the same, violent motion as before, but overall in more constant up and down, in and out motions, as well as taco'ing and pushing against the roof of my mouth and against the back of my teeth.
I occasionally have a hard time with s's and t's (they lisp or turn into more d-like sounds), but others haven't noticed that yet. My singing training has left me hyper-aware of how to make correct sounds and engage in a solid mouth posture, so I'm able to work around the constant motion, but I'm scared it'll get worse and I'll start slurring to go along with my more labored voice (also, apparently unnoticed by my friends, family, and colleagues).
Simply: does anyone's ALS experience share some of these symptoms?
-constant tongue movement, no notable atrophy as of yet but it is 24/7 motion and disrupts my sleep
-constant jaw movement, including teeth grinding, popping side to side, and jutting out
-perceived weakness in arms and legs
-hyporeflexia in legs as noted by neurologist in the hospital ("couldn't hardly get a reflex out of you")
-decreased coordination in hands, particularly after activities that require fine motor control (my hands had a hard time typing this after I shredded a large block of cheese for dinner, unscrewing my contact case requires careful attention or it pops out of my hands, playing the piano has grown more difficult, etc)
-tremor in left hand when I extend arms in front of myself, tingling and shaking in both hands when I squeeze my fists
-less steady gait, though I can still walk backwards/balance on each foot/etc
-general tiredness and some bouts of extreme fatigue
-constant brain fog
-"hot flashes" when I just start sweating like crazy, particularly when I sleep
-frequent finger and toe twitching/curling, electric feeling in thighs and calves when at rest, occasional leg twitching
-occasional frequent urination (for a few weeks it was like every time I drank anything I had to urinate within an hour)
-some "yawn attacks", where I'll yawn 3 or 4 times in a row before just forcing myself to stop yawning
-feeling I need to swallow several times for things to clear down sometimes
As each test comes back positive, I grow more and more concerned. The list of possible, non-ALS conditions that would explain these symptoms seems to grow thinner and thinner all the time. The movement has already led me to turn down professional contracts, cancel social plans, and has also, frankly, left my nerves in shambles. I can hardly sleep. I have to force myself to eat and have lost 8 pounds in the last month. Every time I seriously consider what my future could be, I start crying because my brain just catastrophizes constantly. It seems like in a matter of a month my entire quality of life has tanked and I'm only 32 years old.
So far, I've forced myself to return to work teaching voice and going to rehearsals for a stage production I'm currently under contract for. I have resumed my daily 5-mile walks and also going to the gym 4x a week, though lifting less weight at the hospital neuro's suggestion and experiencing greater fatigue/less stability than before.
Thank you so much for any consideration/advice. I understand that if I have ALS, I already have it and that's all there will be to that, but I wanted to reach out and hear if you all had any advice/experience that leads you to suspect one way or the other.
I want to start by thanking you all for your time and consideration. I've followed the forum for about a month now and I want to be sure to be adequately respectful of whatever help/advice you can give me. That you're willing to field concerns like this at all is truly generous and I appreciate it. I've read all of the stickies and done my best to try and talk myself out of asking before my EMG, but I can't seem to help it at this point.
I am a 32-year-old man who has no family history of neurological/neuromuscular issues. Before my symptoms started, I was a rather typical guy who had made some great changes. Lost 115 pounds in a year through exercise and diet changes. Strength training 5x a week and daily 5-mile walks. I'd never been healthier in my life. Around three months ago, I sustained a grade 3 calf tear in my right leg and had been getting consistent physical therapy, but recovery was going great. Then, a month ago, I had some sort of strange episode.
On 6/11, while out on a walk with a friend, my tongue started moving on its own. Thrashing around in my mouth, squeezing and then releasing, pushing up against my teeth or even out past my lips on occasion. My jaw moved involuntarily as well, popping from side to side and jutting forward.
I had never experienced anything of the sort before, so I asked my friend to take me to the ER. While there, the doctor admitted that he'd never seen anything of the sort before. He did a CT scan of my stomach (I was experiencing pain there), which came back completely clear. They gave me some Benadryl which lulled me to sleep and then sent me home with instructions to follow up with a neurologist.
The next day (6/12), I experienced similar movement all day long, though less violently than it had first set in. By the end of the day, however, it had grown completely wild again and I, in a panic, went back to the Emergency Room where they tested me for blood clots and did a CT of my head. The tests they ran came back clear and the doctor suggested I may have some kind of movement disorder, though he is no neurologist and admitted as much. Once again, I went home with only questions which led me to Google. A mistake, in retrospect, but involuntary tongue and jaw motion that doesn't stop seemed a scary enough symptom for me to risk the gander. I wish I hadn't.
In the weeks since, I've developed a shaky sense of balance and my fingers are clumsy and uncoordinated. My muscles feel slow and occasionally "sticky", particularly in my hands. I'm a singer by trade and I've noticed that there are spots of my voice that are scratchy and more difficult to support/sustain since this started, not to mention the hell it is to try and maintain proper mouth posture with my tongue moving so much. As of yet, I can still sing and make a decent sound, but it's not anywhere near what I could do before this all started a month ago.
I go through bouts of heavy sweating at night, sometimes waking up completely soaked through and I have brain fog constantly. I've also gone through a few rounds of extreme fatigue, the likes of which showed me that I had previously not understood at all how fatigued a person could feel. The third of these rounds had me so tired and weak that I had to go back to the ER where I could barely walk unassisted and couldn't even hardly keep my head up.
While at the ER for the third time (6/18), they rushed me to a bigger hospital by ambulance so I could be admitted to the neuro ward. The doctors there took great care of me, running every imaginable test including an astonishing number of blood tests, MRIs of my brain and cervical spine, and a lumbar puncture.
The neurologist at the hospital was absolutely amazing and did serious research as well as assure me that in his many years of neurological practice, after having worked with "dozens and dozens" of patients who ended up being diagnosed with ALS, he felt like my chances of having it with my symptom presentation, age, and the clinical tests he ran with me were "about as good as [his] chances of winning the powerball." He reassured me over and over that I'd be a study in a unique presentation of the disease in neurology journals and that he was far more concerned about neurotoxicity or an infection in the spine.
I was in the hospital for four days and none of the tests came back positive at all. The MRIs were completely clean, the only abnormality in the blood tests he found was a low-normal B12 number, but he insisted that it was nowhere near low enough to be causing the issues I have. He checked me for fasciculations throughout my body and didn't see any. He said my tongue looked to him to be more tremulous or even "undulating", given how rigorous the movement was and how shaky my tongue is when I stick it out. I've never taken anti-psychotics, so the motion cannot be tardive dyskinesia, but it's what he would've guessed.
In the end, he apologized that he couldn't order and perform an EMG (this hospital doesn't offer that test except for as a clinical, outpatient service) because he wanted to be able to "close the door" on my anxiety about ALS, but referred me to a neuromuscular specialist who was supposed to get me in for the EMG/NCS within the week.
The only other strange thing that came back was during my barium swallow test. The speech expert who ran the test said that my swallow action is "perfect" and completely normal, but my tongue "fasciculates" (she seemed adamant that it was not tremor based on the action she witnessed during the x-ray), which causes whatever I'm eating or drinking to shake on my tongue and not form into a proper bolus for swallowing.
She says there is no residue anywhere and my swallow is, again, exactly what it ought to be other than the fact that my tongue keeps what I'm consuming from being shaped properly. She has no idea what could be causing that, but suggested making sure everything was chewed adequately and keeping an eye on things.
The neuromuscular guy who was meant to meet with me for the EMG read over my file and said that I'm not urgent enough to meet with within the next week, scheduling me for August 22nd. I found out that he doesn't do bulbar tests, however, so I kept a previously made appointment (7/12) with a neurologist in my area who can, hopefully, refer me to a doctor who does perform a bulbar test. My tongue continues to move constantly, occasionally working up to the same, violent motion as before, but overall in more constant up and down, in and out motions, as well as taco'ing and pushing against the roof of my mouth and against the back of my teeth.
I occasionally have a hard time with s's and t's (they lisp or turn into more d-like sounds), but others haven't noticed that yet. My singing training has left me hyper-aware of how to make correct sounds and engage in a solid mouth posture, so I'm able to work around the constant motion, but I'm scared it'll get worse and I'll start slurring to go along with my more labored voice (also, apparently unnoticed by my friends, family, and colleagues).
Simply: does anyone's ALS experience share some of these symptoms?
-constant tongue movement, no notable atrophy as of yet but it is 24/7 motion and disrupts my sleep
-constant jaw movement, including teeth grinding, popping side to side, and jutting out
-perceived weakness in arms and legs
-hyporeflexia in legs as noted by neurologist in the hospital ("couldn't hardly get a reflex out of you")
-decreased coordination in hands, particularly after activities that require fine motor control (my hands had a hard time typing this after I shredded a large block of cheese for dinner, unscrewing my contact case requires careful attention or it pops out of my hands, playing the piano has grown more difficult, etc)
-tremor in left hand when I extend arms in front of myself, tingling and shaking in both hands when I squeeze my fists
-less steady gait, though I can still walk backwards/balance on each foot/etc
-general tiredness and some bouts of extreme fatigue
-constant brain fog
-"hot flashes" when I just start sweating like crazy, particularly when I sleep
-frequent finger and toe twitching/curling, electric feeling in thighs and calves when at rest, occasional leg twitching
-occasional frequent urination (for a few weeks it was like every time I drank anything I had to urinate within an hour)
-some "yawn attacks", where I'll yawn 3 or 4 times in a row before just forcing myself to stop yawning
-feeling I need to swallow several times for things to clear down sometimes
As each test comes back positive, I grow more and more concerned. The list of possible, non-ALS conditions that would explain these symptoms seems to grow thinner and thinner all the time. The movement has already led me to turn down professional contracts, cancel social plans, and has also, frankly, left my nerves in shambles. I can hardly sleep. I have to force myself to eat and have lost 8 pounds in the last month. Every time I seriously consider what my future could be, I start crying because my brain just catastrophizes constantly. It seems like in a matter of a month my entire quality of life has tanked and I'm only 32 years old.
So far, I've forced myself to return to work teaching voice and going to rehearsals for a stage production I'm currently under contract for. I have resumed my daily 5-mile walks and also going to the gym 4x a week, though lifting less weight at the hospital neuro's suggestion and experiencing greater fatigue/less stability than before.
Thank you so much for any consideration/advice. I understand that if I have ALS, I already have it and that's all there will be to that, but I wanted to reach out and hear if you all had any advice/experience that leads you to suspect one way or the other.
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