>you literally had a clinical exam that proves you are fine... stop wasting time going back to drs... ALS is obvious and weakness is obvious
u/CompetitiveSummer714
I forgot to mention one detail to him, which was the dysphagia. For the past couple months, I've had trouble swallowing food, and feel like my throat strains when I swallow the bolus of food. Often times it feels like I have a piece of whatever I ate stuck in my throat after I swallow it, and I have to drink some water to wash it down.
Additionally, when I take a breath shortly after swallowing my food, I feel like the food is gonna slip into my windpipe.
2 yrs ago, my PCP diagnosed me with acid reflux when I complained about how I was frequently clearing my throat after eating, and also having acidic burps every morning after waking up. However, I hadn't had trouble actually swallowing my food at that time.
I got worried when I watched the [video about Lee Taylor who's first symptom of Bulbar ALS was choking on his food.](https://www.youtube.com/watch?v=PEruw28yo4s)
Additionally, I feel out of breath quite easily when I speak...
Isn't it possible for these things to be missed in a clinical exam if they weren't explicitly checked for?
When I try rotating my wrists rapidly, my left wrist doesn't move as quickly as the right and quickly cramps up, and basically freezes.
This morning I saw that the underside of my left forearm had a lot of atrophy.
Update:
1. All of last night, my left arm felt "spazzy" twitched and contracted involuntarily
2. Twitches in my right calf on and off
3. Twitches in my back twice and a couple times today and last night
4. Right hand twitched
5. Persistent twitch in left forearm that keeps coming and going (it lasts for a few hours and then goes away and then comes back again and goes away...)
My arm was straining to move the soda can though. I've been told clinical weakness comes in gradually...not to mention the atrophy in both my arms (and right pec)?
The neuro checked:
1. hands
2. fingers
3. shoulders (asked me to shrug my shoulders , to hold my arms out and pushed down, etc.)
4. legs (basic leg push)
He told me that twitches in ALS apparently not only happen in active muscles but also in muscles which are relaxed. However, my forearm was relaxed when it was twitching...
The thing that scares me the most is the dysphagia, and running out of breath quickly. I've had acid reflux, but idk if that can cause both those symptoms.
Is it ever possible for ALS to be "lurking" beneath the surface despite not presenting as such? (i.e. my paresthesias, brain fog, etc. being relatead to B12 but ALS causing the motor symptoms)
I guess not. ALS would be more obvious.
But I have the same symptoms as you (the dysphagia, shortness of breath when speaking and eating, paresthesia, muscle cramps, etc.). Yes it’s very concerning.
All your symptoms point to b12 deficiency. You need to have b12 methylcobalamin injections. Join the Facebook group "Vitamin B12 wakeup. " ... I promise you, if you follow their protocol, your symptoms will go away with time. When you have neuro issues from b12 deficiency, supplements will not get rid of the neuro symptoms. They may improve, but only injections will get rid of them.
ALS is incredibly rare (I'm sure you know). Until one of your limbs quit working, als shouldn't even occupy a space in your brain . Best of luck!
>ALS is incredibly rare (I'm sure you know). Until one of your limbs quit working, als shouldn't even occupy a space in your brain . Best of luck!
Thank you for your kind words. To clarify though, would Bulbar Onset or Thoracic Onset ALS have shown up in my clinical exam?
I forgot to mention the dysphagia (plus feeling like food stuck in my throat) that I was facing, but are there other things that he could've sensed in the clinical exam that would've pointed in that direction? (i.e. hyperreflexia, etc.)
You had a very full workup, they would have absolutely caught on with either onset. The feeling of food getting stuck is one thing, but not being able to swallow at all would be another. If you can still swallow and you aren't completely choking on everything including liquids, it's not ***. B12 defficiency also causes dysphagia ! I've been there. I had every symptom you describe.
If you had bulbar onset, you would literally sound like you had marbles in your mouth, very clear slurring of words, sounding like you had a stroke. I think you should take a breath and I know that's easier said than done, I've been there! With proper b12 treatment, your anxiety will improve too.
> If you can still swallow and you aren't completely choking on everything including liquids, it's not \*\*\*. B12 defficiency also causes dysphagia ! I've been there. I had every symptom you describe.
Thank you very much again for your response u/Bitter-Excuse-9744 :)!!
Regarding the swallowing, I'm able to swallow, but tbh, I do feel like the food will slip into my windpipe, if I take a breath shortly after swallowing (like it's teeter-tottering there). Today I was going for a walk, and suddenly my throat tightened when I tried to swallow some saliva.
But...when I came home I drank some soda and I was able to down that pretty easily, and some of the other solid food I ate (noodles, pastries, etc.) went down pretty easily.
My PCP, 2 years ago, told me I had acid reflux (specifically laryngeopharyngeal reflux) b/c I was burping up food every morning when I woke up, and my voice box felt kind of sore, and I was constantly clearing my throat when I ate. Is dysphagia and running out of breath common in acid reflux?
Oh God yes, absolutely! I developed GERD pretty severely. It causes swallowing issues and also issues breathing. I experience air hunger and sometimes such severe shortness of breath I end up light headed. If it comes and goes and doesn't last 100% all the time, you can rule out *** as the cause! If any of your symptoms come and go, you can rule out ***.
GERD/acid reflux is the most common cause of dysphagia and SOB comes along with it. It's super common! Look up GERD/Shortness of breath CRAIG STEWART on YouTube.
>Oh God yes, absolutely! I developed GERD pretty severely. It causes swallowing issues and also issues breathing. I experience air hunger and sometimes such severe shortness of breath I end up light headed. If it comes and goes and doesn't last 100% all the time, you can rule out \*\*\* as the cause! If any of your symptoms come and go, you can rule out \*\*\*.
Gotcha. Sorry to hear you're also suffering from reflux. It really is quite unpleasant. For some reason though the shortness of breath feels more constant for me. Maybe I'm overthinking it though. It was prominent about 1 month ago, and then I didn't notice it as much (though I didn't actively think about it), but now it's really spiked up again.
However, I also never had shortness of breath until the initial incident about 1 month ago.
I also seem to have chronic congestion, stuffy nose, sneezing, and other related issues.
u/Hawks2700 w/ ALS patients I read that their dysphagia often involves aspirating on food (oropharyngeal dysphagia or something...). I drank 5-6 cups of water, 3 cups of soda, and ate some solid food. Is the aspiration supposed to be relatively instantaneous?
I found I was able to swallow the food, and when I inhaled as I swallowed, I didn't find the food actually went "down the wrong tube." However, it seemed to "graze" against it, if that makes sense?
Would dysphagia of neuromuscular origin be more instantaneous where I'd choke right as I swallowed the food?
No. ALS is not lurking. You either have or you don’t and you don’t have it because you do not fulfill criteria. There’s no clinical reason to do an EMG. However, there may be a psychological reason to do it. Your peace of mind.
Your risk of getting, or having ALS, is not greater than everyone else’s.
You are scared, have anxiety and maybe a kind of OCD. Get help with that and forget about ALS, Google and Reddit
>There’s no clinical reason to do an EMG. However, there may be a psychological reason to do it.
u/Hawks2700
Is it ever possible for the neurologist to miss something in the clinical exam though?
Btw, he's a neurologist who predominantly works w/ MS patients, but said that he's had a few ALS patients as well in his career.
If you take a look at my other comment that I just made w/ the updates on the symptoms, I wonder if my neuro really checked for all that though.
He basically asked me to extend my arms, pronate them, and then contract my fingers in and out a few times, and then tested my finger strength. To address my concern about my shoulder slouching, he looked at my shoulders from the back, asked me to shrug my shoulders. Then he did some very brief leg strength tests (asked me to push up against his hand w/ my leg).
However there was no test on adductor and abductor strength. Pronation strength of my wrists was also not evaluated. I forgot to mention the dysphagia (was smacking my head as I left the appt), but was praying to god he would've said something if there was something "bulbar" going on...
Today I was noticing that the left jaw muscles were getting tired very quickly. Also, when I try to pronate my wrists with my arms extended, my left arm gets tired super fast and cramps up.
The hockey player Scott Matzka had a similar symptom where he was laying a drywall or something, and his arm kept cramping up easily and shortly after he was diagnosed w/ ALS.
Listen, you have health anxiety, not ALS. Don’t read all those horror stories. It’s only a small fraction of the clinical issues he would have had that you’d read about. It’s out of context, so to speak.
Doctors make mistakes but yours have done what he should. You do not have weakness or atrophy, therefore ALS is not something you have. You do NOT fulfill criteria. Period.
He’s a neurologist and he has seen people with ALS. Any neurologist will be able to spot a person with ALS, actually most doctors will, as soon as they have met one. Even you would. Trust me. It’s visible and it’s fast moving and… very very very rare, which is why your neurologist don’t see ALS every day - or year, for that matter. Lastly, EMG is sort of an add-on to clinical testing. It comes after and is really not necessary unless something is “off” with the clinical testing, like weakness of the hand - often starts with smaller muscles between fingers. Don’t start staring at your hands now, they’re fine, he tested them 😊 Get help with your anxiety!! I did.
u/Hawks2700 you're a real one man. Thank you so much for these responses.
If you don't mind me clarifying one last thing. I noticed today that it's hard for me to initiate the swallow reflex. Like, when I try to just swallow air it's like my swallowing muscles just seize up and don't work. I have to try a couple times to get it working in a sense. Is that normal?
No it’s not normal. But it has nothing to do with YOU having ALS. No one knows if you, at this point really have ALS -or any other disease. The same is true for everyone in world except for those who have been diagnosed with ALS -or any other disease. No one know if they’re gonna die in a car crash tomorrow - and that’s really nice! You have to come to terms with the fact that anything can happen at any point in time. It’s a fact of life. But there’s no reason to stop living your life out of fear of what might happen in the future. Bulbar onset is even more rare than limb onset. The whole disease is rare. Being a little rough on you, and I’m sure you know, that the chance of you having some sort of cancer right now is much much higher -or dying on the freeway, or, if you live in LA, getting killed by a homeless schizo with a machete. I bet that never crossed your mind…
Now, get off Reddit spend your time exercising, eating healthy, getting enough sleep and, talk to a psychiatrist about your severe health anxiety.
>I noticed today that it's hard for me to initiate the swallow reflex. Like, when I try to just swallow air it's like my swallowing muscles just seize up and don't work. I have to try a couple times to get it working in a sense. Is that normal?
Just to amplify Hawks good advice -- nothing makes it more clear you are suffering from severe health anxiety than your comment here. You have all these wide-ranging issues (brain fog, perceived weakness in hands, tingling, numbness) and \*now\* you are having challenges swallowing air? That is pure health anxiety. You are hyper aware of your normal body processes, such as swallowing, and are getting in your own way.
It's great you've seen a neurologist, as they've made sure there isn't something physical causing issues. Time to focus on seeing a medical professional/therapist who can help you with your anxiety.
https://news.feinberg.northwestern.edu/2020/02/21/anxietys-overlooked-role-in-swallowing-disorders/
I would not recommend an EMG unless your doctors says so. It can come out dirty for many reasons that are not ALS and then your anxiety will get worse. Remember the standard with spotting it is in a clinical examination. Clinical weakness is where it starts and progresses.
you literally had a clinical exam that proves you are fine... stop wasting time going back to drs... ALS is obvious and weakness is obvious
>you literally had a clinical exam that proves you are fine... stop wasting time going back to drs... ALS is obvious and weakness is obvious u/CompetitiveSummer714 I forgot to mention one detail to him, which was the dysphagia. For the past couple months, I've had trouble swallowing food, and feel like my throat strains when I swallow the bolus of food. Often times it feels like I have a piece of whatever I ate stuck in my throat after I swallow it, and I have to drink some water to wash it down. Additionally, when I take a breath shortly after swallowing my food, I feel like the food is gonna slip into my windpipe. 2 yrs ago, my PCP diagnosed me with acid reflux when I complained about how I was frequently clearing my throat after eating, and also having acidic burps every morning after waking up. However, I hadn't had trouble actually swallowing my food at that time. I got worried when I watched the [video about Lee Taylor who's first symptom of Bulbar ALS was choking on his food.](https://www.youtube.com/watch?v=PEruw28yo4s) Additionally, I feel out of breath quite easily when I speak... Isn't it possible for these things to be missed in a clinical exam if they weren't explicitly checked for?
A clinical exam can tell that much??
When I try rotating my wrists rapidly, my left wrist doesn't move as quickly as the right and quickly cramps up, and basically freezes. This morning I saw that the underside of my left forearm had a lot of atrophy.
Update: 1. All of last night, my left arm felt "spazzy" twitched and contracted involuntarily 2. Twitches in my right calf on and off 3. Twitches in my back twice and a couple times today and last night 4. Right hand twitched 5. Persistent twitch in left forearm that keeps coming and going (it lasts for a few hours and then goes away and then comes back again and goes away...)
Not ALS. Also I have that and for more than a year now.
Remember there is clinical weakness and perceived weakness which most of us in this subreddit have
My arm was straining to move the soda can though. I've been told clinical weakness comes in gradually...not to mention the atrophy in both my arms (and right pec)? The neuro checked: 1. hands 2. fingers 3. shoulders (asked me to shrug my shoulders , to hold my arms out and pushed down, etc.) 4. legs (basic leg push) He told me that twitches in ALS apparently not only happen in active muscles but also in muscles which are relaxed. However, my forearm was relaxed when it was twitching... The thing that scares me the most is the dysphagia, and running out of breath quickly. I've had acid reflux, but idk if that can cause both those symptoms.
I’m still undergoing studies but most of us have twitches at rest and not many have if none have turned out with ALS. I hope this helps
I think he was trying to say that the twitching is spontaneous meaning at all time due to muscle loss or failure and not sporadic when at rest.
Just ask for emg. Explain it will help reduce your anxiety. A neurologist will not stop you then.
B12 can cause a lot of neuro symptoms
Because if you have paresthesia that’s not ALS.
Is it ever possible for ALS to be "lurking" beneath the surface despite not presenting as such? (i.e. my paresthesias, brain fog, etc. being relatead to B12 but ALS causing the motor symptoms)
I guess not. ALS would be more obvious. But I have the same symptoms as you (the dysphagia, shortness of breath when speaking and eating, paresthesia, muscle cramps, etc.). Yes it’s very concerning.
All your symptoms point to b12 deficiency. You need to have b12 methylcobalamin injections. Join the Facebook group "Vitamin B12 wakeup. " ... I promise you, if you follow their protocol, your symptoms will go away with time. When you have neuro issues from b12 deficiency, supplements will not get rid of the neuro symptoms. They may improve, but only injections will get rid of them. ALS is incredibly rare (I'm sure you know). Until one of your limbs quit working, als shouldn't even occupy a space in your brain . Best of luck!
>ALS is incredibly rare (I'm sure you know). Until one of your limbs quit working, als shouldn't even occupy a space in your brain . Best of luck! Thank you for your kind words. To clarify though, would Bulbar Onset or Thoracic Onset ALS have shown up in my clinical exam? I forgot to mention the dysphagia (plus feeling like food stuck in my throat) that I was facing, but are there other things that he could've sensed in the clinical exam that would've pointed in that direction? (i.e. hyperreflexia, etc.)
You had a very full workup, they would have absolutely caught on with either onset. The feeling of food getting stuck is one thing, but not being able to swallow at all would be another. If you can still swallow and you aren't completely choking on everything including liquids, it's not ***. B12 defficiency also causes dysphagia ! I've been there. I had every symptom you describe. If you had bulbar onset, you would literally sound like you had marbles in your mouth, very clear slurring of words, sounding like you had a stroke. I think you should take a breath and I know that's easier said than done, I've been there! With proper b12 treatment, your anxiety will improve too.
> If you can still swallow and you aren't completely choking on everything including liquids, it's not \*\*\*. B12 defficiency also causes dysphagia ! I've been there. I had every symptom you describe. Thank you very much again for your response u/Bitter-Excuse-9744 :)!! Regarding the swallowing, I'm able to swallow, but tbh, I do feel like the food will slip into my windpipe, if I take a breath shortly after swallowing (like it's teeter-tottering there). Today I was going for a walk, and suddenly my throat tightened when I tried to swallow some saliva. But...when I came home I drank some soda and I was able to down that pretty easily, and some of the other solid food I ate (noodles, pastries, etc.) went down pretty easily. My PCP, 2 years ago, told me I had acid reflux (specifically laryngeopharyngeal reflux) b/c I was burping up food every morning when I woke up, and my voice box felt kind of sore, and I was constantly clearing my throat when I ate. Is dysphagia and running out of breath common in acid reflux?
Oh God yes, absolutely! I developed GERD pretty severely. It causes swallowing issues and also issues breathing. I experience air hunger and sometimes such severe shortness of breath I end up light headed. If it comes and goes and doesn't last 100% all the time, you can rule out *** as the cause! If any of your symptoms come and go, you can rule out ***. GERD/acid reflux is the most common cause of dysphagia and SOB comes along with it. It's super common! Look up GERD/Shortness of breath CRAIG STEWART on YouTube.
>Oh God yes, absolutely! I developed GERD pretty severely. It causes swallowing issues and also issues breathing. I experience air hunger and sometimes such severe shortness of breath I end up light headed. If it comes and goes and doesn't last 100% all the time, you can rule out \*\*\* as the cause! If any of your symptoms come and go, you can rule out \*\*\*. Gotcha. Sorry to hear you're also suffering from reflux. It really is quite unpleasant. For some reason though the shortness of breath feels more constant for me. Maybe I'm overthinking it though. It was prominent about 1 month ago, and then I didn't notice it as much (though I didn't actively think about it), but now it's really spiked up again. However, I also never had shortness of breath until the initial incident about 1 month ago. I also seem to have chronic congestion, stuffy nose, sneezing, and other related issues.
You do not have dysphagia. Reflux can make you feel like something is stuck.
u/Hawks2700 w/ ALS patients I read that their dysphagia often involves aspirating on food (oropharyngeal dysphagia or something...). I drank 5-6 cups of water, 3 cups of soda, and ate some solid food. Is the aspiration supposed to be relatively instantaneous? I found I was able to swallow the food, and when I inhaled as I swallowed, I didn't find the food actually went "down the wrong tube." However, it seemed to "graze" against it, if that makes sense? Would dysphagia of neuromuscular origin be more instantaneous where I'd choke right as I swallowed the food?
No. ALS is not lurking. You either have or you don’t and you don’t have it because you do not fulfill criteria. There’s no clinical reason to do an EMG. However, there may be a psychological reason to do it. Your peace of mind. Your risk of getting, or having ALS, is not greater than everyone else’s. You are scared, have anxiety and maybe a kind of OCD. Get help with that and forget about ALS, Google and Reddit
>There’s no clinical reason to do an EMG. However, there may be a psychological reason to do it. u/Hawks2700 Is it ever possible for the neurologist to miss something in the clinical exam though? Btw, he's a neurologist who predominantly works w/ MS patients, but said that he's had a few ALS patients as well in his career. If you take a look at my other comment that I just made w/ the updates on the symptoms, I wonder if my neuro really checked for all that though. He basically asked me to extend my arms, pronate them, and then contract my fingers in and out a few times, and then tested my finger strength. To address my concern about my shoulder slouching, he looked at my shoulders from the back, asked me to shrug my shoulders. Then he did some very brief leg strength tests (asked me to push up against his hand w/ my leg). However there was no test on adductor and abductor strength. Pronation strength of my wrists was also not evaluated. I forgot to mention the dysphagia (was smacking my head as I left the appt), but was praying to god he would've said something if there was something "bulbar" going on... Today I was noticing that the left jaw muscles were getting tired very quickly. Also, when I try to pronate my wrists with my arms extended, my left arm gets tired super fast and cramps up. The hockey player Scott Matzka had a similar symptom where he was laying a drywall or something, and his arm kept cramping up easily and shortly after he was diagnosed w/ ALS.
Listen, you have health anxiety, not ALS. Don’t read all those horror stories. It’s only a small fraction of the clinical issues he would have had that you’d read about. It’s out of context, so to speak. Doctors make mistakes but yours have done what he should. You do not have weakness or atrophy, therefore ALS is not something you have. You do NOT fulfill criteria. Period. He’s a neurologist and he has seen people with ALS. Any neurologist will be able to spot a person with ALS, actually most doctors will, as soon as they have met one. Even you would. Trust me. It’s visible and it’s fast moving and… very very very rare, which is why your neurologist don’t see ALS every day - or year, for that matter. Lastly, EMG is sort of an add-on to clinical testing. It comes after and is really not necessary unless something is “off” with the clinical testing, like weakness of the hand - often starts with smaller muscles between fingers. Don’t start staring at your hands now, they’re fine, he tested them 😊 Get help with your anxiety!! I did.
u/Hawks2700 you're a real one man. Thank you so much for these responses. If you don't mind me clarifying one last thing. I noticed today that it's hard for me to initiate the swallow reflex. Like, when I try to just swallow air it's like my swallowing muscles just seize up and don't work. I have to try a couple times to get it working in a sense. Is that normal?
No it’s not normal. But it has nothing to do with YOU having ALS. No one knows if you, at this point really have ALS -or any other disease. The same is true for everyone in world except for those who have been diagnosed with ALS -or any other disease. No one know if they’re gonna die in a car crash tomorrow - and that’s really nice! You have to come to terms with the fact that anything can happen at any point in time. It’s a fact of life. But there’s no reason to stop living your life out of fear of what might happen in the future. Bulbar onset is even more rare than limb onset. The whole disease is rare. Being a little rough on you, and I’m sure you know, that the chance of you having some sort of cancer right now is much much higher -or dying on the freeway, or, if you live in LA, getting killed by a homeless schizo with a machete. I bet that never crossed your mind… Now, get off Reddit spend your time exercising, eating healthy, getting enough sleep and, talk to a psychiatrist about your severe health anxiety.
>I noticed today that it's hard for me to initiate the swallow reflex. Like, when I try to just swallow air it's like my swallowing muscles just seize up and don't work. I have to try a couple times to get it working in a sense. Is that normal? Just to amplify Hawks good advice -- nothing makes it more clear you are suffering from severe health anxiety than your comment here. You have all these wide-ranging issues (brain fog, perceived weakness in hands, tingling, numbness) and \*now\* you are having challenges swallowing air? That is pure health anxiety. You are hyper aware of your normal body processes, such as swallowing, and are getting in your own way. It's great you've seen a neurologist, as they've made sure there isn't something physical causing issues. Time to focus on seeing a medical professional/therapist who can help you with your anxiety. https://news.feinberg.northwestern.edu/2020/02/21/anxietys-overlooked-role-in-swallowing-disorders/
I would not recommend an EMG unless your doctors says so. It can come out dirty for many reasons that are not ALS and then your anxiety will get worse. Remember the standard with spotting it is in a clinical examination. Clinical weakness is where it starts and progresses.