DM2792
New member
- Joined
- Dec 17, 2021
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Chicago
Hi there,
I want to start by saying, thank you for having this amazing community of support and information. And sorry for being someone who comes here for this reason.
So I'll try to keep this short as possible, as not to drag on, but I do want to give all the details possible. Info on me: I'm a 28yo male.
This all started in October, and started with weird tingling and random shooting pains on the left side of my body. That lasted a few weeks but finally went away so that could be completely unrelated, but my primary said it was neurological related so I thought I would include it. Anyways, at some point I noticed the fasciculations and muscle twitching on the left side of my body, and in my tongue. The ones in my limbs were not consistent (as it would do it for a few minutes in one spot then go away and start up in a random spot). They show up after workouts a lot, but also on their own. I also noticed I felt some weakness and pain when using my left hand and foot. This part isn't that bad and really did not have me very worried at all.
My tongue is what really worried me. The tongue fasciculations started very subtly and have now progressed and are very bad. It looks like there's little waves moving under the surface of my tongue, while also my tongue quivers shakes and moves constantly. When I rest it the sides twitch in at random and the middle dips at random, and you can subtly see the "waves" or "worms" (I will say the waves/worm looking twitches are no where near as extreme as you see in youtube videos when you google it). It also feels like my left side of my tongue is weaker than the right side, but I don't know if this is just me overthinking. I also feel like the middle of my tongue has a bigger dip in it that it did before, but again not sure if this is overthinking.
I have also noticed that my lips quiver when I open my mouth (smile or just open wide), they quiver and have little twitches. And occasionally the corners of my mouth twitch at rest.
Further, I have not had issues swallowing, but I have noticed in the last 2 weeks that when I go to drink something a small amount sometimes pours back out of my mouth. I am naturally a cluts, spill a lot, accidentally spit a lot (gross sorry), so I don't know if this is normal and if I'm just hyper aware or not. But it's happening often enough that it's noticeable and I'm counting. The weird thing about it is though, is I have full range of motion in my lips, I can do everything normal, purse them hard, they don't feel weaker at all when I move them around.
And then there's my speech. I personally feel that I have subtly started to slur any words with "s" in it, and that it's slowly getting worse. However, no one around me consistently has noticed it at all. No one has said anything to me, and when I ask no one notices it. Again maybe in my head, but when I do it seems like I can *feel* it, as in I feel my tongue not making the full range to pronounce the "s," when I do it in casual conversation. When I try and purposely pronounce it correctly it's fine, but I notice it when I'm just talking not thinking or trying, and I hear/feel the slur. No one else hears it though, so maybe that's just my normal slur or lisp and again, now I'm hyper aware. The slur that (I think) I feel is like the tip of my tongue and left side is weak, and my lips are weak when talking. I have seen any noticeable atrophy, besides that I think there is some in the middle of it, but no one notices.
One thing I know is definitely not being caused by my hyper awareness, is that the tongue twitches are getting worse as the days go on. That you can physically see and I can't deny that. My peers have even seen this as witnesses
So all this being said, I went to a neurologist, and overall he did not seem to concerned about anything. He did want to run an EMG on the left side of my body for peace of mind, and it came back clean everywhere.
With the tongue: he said he would run the EMG on the tongue, however there are many "false positives" as the only way to really put the tongue at rest is to put me under. So he said it wouldn't really draw any conclusions- even if I open my mouth and "rest" my tongue it's not really resting. At the same time, he did see the tongue fasciculations when the tongue was out, and even some when I was resting it, but said that it only matters when the tongue is fully at rest, and that also tongue fasciculations don't automatically mean ALS at all (he even knew of that article that scares people online where the doctor says "if they look like worms under the tongue it's 100% ALS," and said that's not true at all). He said that I would likely have a very distinct and noticeable slur or difficult swallowing with Bulbar Onset. And lastly he said that it would be so extremely rare for me to have bulbar and limb onset at the same time (I was really only concerned about the bulbar and did not think anything of my other issues being related to ALS) that he would be shocked. Ultimately, though I left very comforted.
A few things he said could be the cause of all of this: Post-Covid (er long covid- however my covid case was about 5-6months before this all started and he said it'd be weird that there was a gap between this all starting and me having the virus), I caught another virus in October that's causing this, or I was prescribed Cymbalta and was on it for about 3 weeks and stopped cold turkey because it made my symptoms (and anxiety) a million times worse but he said it could be side-effects.
That was until these tongue twitches still continued to get worse, and I feel like I'm slurring my speech more and more. Everything else is moving towards a getting better direction, but my mouth and tongue are not. And still no one can hear the slur! But I know I have small difficulty with pronouncing "s" in words.
And then I took to the internet (which I have avoided as much as possible), and read stories of people's speech symptoms coming on slowly, despite what the neurologist said. So here I am, a pretty anxious and worried. I'm in another state visiting family for the holidays so I can't make an appointment with him for a while. And the problem I'm having with all the things he said could be causing this: the tongue stuff is getting worse, not better when if it was those things, it should be getting better.
I'm sorry for the length of this, I tried to keep it short as possible but I wanted to include everything. And overall, I thought I was past this scare, but I'm honestly very worried now with progression of this twitching. Thank you again for any responses, and thank you to this great community.
I want to start by saying, thank you for having this amazing community of support and information. And sorry for being someone who comes here for this reason.
So I'll try to keep this short as possible, as not to drag on, but I do want to give all the details possible. Info on me: I'm a 28yo male.
This all started in October, and started with weird tingling and random shooting pains on the left side of my body. That lasted a few weeks but finally went away so that could be completely unrelated, but my primary said it was neurological related so I thought I would include it. Anyways, at some point I noticed the fasciculations and muscle twitching on the left side of my body, and in my tongue. The ones in my limbs were not consistent (as it would do it for a few minutes in one spot then go away and start up in a random spot). They show up after workouts a lot, but also on their own. I also noticed I felt some weakness and pain when using my left hand and foot. This part isn't that bad and really did not have me very worried at all.
My tongue is what really worried me. The tongue fasciculations started very subtly and have now progressed and are very bad. It looks like there's little waves moving under the surface of my tongue, while also my tongue quivers shakes and moves constantly. When I rest it the sides twitch in at random and the middle dips at random, and you can subtly see the "waves" or "worms" (I will say the waves/worm looking twitches are no where near as extreme as you see in youtube videos when you google it). It also feels like my left side of my tongue is weaker than the right side, but I don't know if this is just me overthinking. I also feel like the middle of my tongue has a bigger dip in it that it did before, but again not sure if this is overthinking.
I have also noticed that my lips quiver when I open my mouth (smile or just open wide), they quiver and have little twitches. And occasionally the corners of my mouth twitch at rest.
Further, I have not had issues swallowing, but I have noticed in the last 2 weeks that when I go to drink something a small amount sometimes pours back out of my mouth. I am naturally a cluts, spill a lot, accidentally spit a lot (gross sorry), so I don't know if this is normal and if I'm just hyper aware or not. But it's happening often enough that it's noticeable and I'm counting. The weird thing about it is though, is I have full range of motion in my lips, I can do everything normal, purse them hard, they don't feel weaker at all when I move them around.
And then there's my speech. I personally feel that I have subtly started to slur any words with "s" in it, and that it's slowly getting worse. However, no one around me consistently has noticed it at all. No one has said anything to me, and when I ask no one notices it. Again maybe in my head, but when I do it seems like I can *feel* it, as in I feel my tongue not making the full range to pronounce the "s," when I do it in casual conversation. When I try and purposely pronounce it correctly it's fine, but I notice it when I'm just talking not thinking or trying, and I hear/feel the slur. No one else hears it though, so maybe that's just my normal slur or lisp and again, now I'm hyper aware. The slur that (I think) I feel is like the tip of my tongue and left side is weak, and my lips are weak when talking. I have seen any noticeable atrophy, besides that I think there is some in the middle of it, but no one notices.
One thing I know is definitely not being caused by my hyper awareness, is that the tongue twitches are getting worse as the days go on. That you can physically see and I can't deny that. My peers have even seen this as witnesses
So all this being said, I went to a neurologist, and overall he did not seem to concerned about anything. He did want to run an EMG on the left side of my body for peace of mind, and it came back clean everywhere.
With the tongue: he said he would run the EMG on the tongue, however there are many "false positives" as the only way to really put the tongue at rest is to put me under. So he said it wouldn't really draw any conclusions- even if I open my mouth and "rest" my tongue it's not really resting. At the same time, he did see the tongue fasciculations when the tongue was out, and even some when I was resting it, but said that it only matters when the tongue is fully at rest, and that also tongue fasciculations don't automatically mean ALS at all (he even knew of that article that scares people online where the doctor says "if they look like worms under the tongue it's 100% ALS," and said that's not true at all). He said that I would likely have a very distinct and noticeable slur or difficult swallowing with Bulbar Onset. And lastly he said that it would be so extremely rare for me to have bulbar and limb onset at the same time (I was really only concerned about the bulbar and did not think anything of my other issues being related to ALS) that he would be shocked. Ultimately, though I left very comforted.
A few things he said could be the cause of all of this: Post-Covid (er long covid- however my covid case was about 5-6months before this all started and he said it'd be weird that there was a gap between this all starting and me having the virus), I caught another virus in October that's causing this, or I was prescribed Cymbalta and was on it for about 3 weeks and stopped cold turkey because it made my symptoms (and anxiety) a million times worse but he said it could be side-effects.
That was until these tongue twitches still continued to get worse, and I feel like I'm slurring my speech more and more. Everything else is moving towards a getting better direction, but my mouth and tongue are not. And still no one can hear the slur! But I know I have small difficulty with pronouncing "s" in words.
And then I took to the internet (which I have avoided as much as possible), and read stories of people's speech symptoms coming on slowly, despite what the neurologist said. So here I am, a pretty anxious and worried. I'm in another state visiting family for the holidays so I can't make an appointment with him for a while. And the problem I'm having with all the things he said could be causing this: the tongue stuff is getting worse, not better when if it was those things, it should be getting better.
I'm sorry for the length of this, I tried to keep it short as possible but I wanted to include everything. And overall, I thought I was past this scare, but I'm honestly very worried now with progression of this twitching. Thank you again for any responses, and thank you to this great community.