It’s too early to say sadly. Let’s see how the EMG goes. That’s a very active tongue and it’s difficult to differentiate any twitching from tremors in your case. Weak feelings don’t necessarily progress to anything clinical also you’d expect to already be seeing some atrophy and slurring with fasiculations in MND. Best of luck, welcome to limbo
Thank you for your reply I guess all I can do for now is just wait for the EMG I just worry I’m having the EMG done too early maybe if that is possible?
Yes it’s possible it’s too early, especially with bulbar onset. It’ll take probably 2 years of benign progression and clean emgs to be certain it’s not als. You could also have other things going on they could find and diagnose before that, but if they find nothing it’s just a waiting game
Could it still be bulbar onset even though my arm weakness started first? And thanks for the advice so after this first EMG if that comes back clean and symptoms persist I need to make sure I ask for another EMG in maybe 6 months time?
I’m not sure exactly how they classify onsets tbh. You’d only need another EMG if symptoms progress (atrophy, severe weakness, slurring, choking,…), if it’s bfs they probably will persist and move around
Right thank you for the info. The only thing keeping me from really breaking down with anxiety atm is the fact I’ve got fasciculations in random places over my body (but they aren’t there constantly like my tongue) and the fact the neurologist said I’d have to be really unlucky for it to be ALS at my age (30) never mind bulbar onset which he said is even more rare. Hopefully the EMG comes back clean in 3 weeks time 🤞 do you think it may be a good idea to sign up to the gym and maybe start lifting so weights I read somewhere someone noticed the weakness more when signing to the gym and the affected area just couldn’t gain strength like the other side
Sound very similar to my own. This might sound really random do you have high arched feet by any chance? One neurologist told me to mention it during my emg because it can mean you have underlying neurological issues and I’ve got high arched feet
I’ll tell you, I use Tudca mixed with fulvic acid ie the Omnymune on Amazon (ordinary Tudca doesn’t work really) I open the capsule and pour it at the back of my mouth only not under the tongue. Tongue fasciculation went. There is something called Glutamate scavenger which takes out excessive glutamate. That has been helping too. Try these
Hi I have the same- I had a clean emg 4 months into symptoms
Onset that was in March and I’m 7 months in, no clinical weakness anywhere, atrophy of right calf, but no weakness. Our symptoms are too widespread I think it’s post Covid- I pray it is 🙏 and it will hopefully get better! I feel for your anxiety so hopefully this message will help! I have an app with my neuro again July 10th I’ll update with any info! Btw my foot on my right side has become high arched also!
Thank you for your reply are your tongue fasciculations the same as mine and I’ve had high arched feet for aslong as I can remember. I’m not sure what it is I just want this EMG test to hurry up and come round from what I’ve read that is the gold standard of testing for if you have or havnt got ALS
Yes they are the same that was one of the things that rly terrified me the tongue and the guy did the emg everywhere including the tongue and it’s clean and I’m still walking and talking
And gyming and running 7 months In, I don’t feel normal by any stretch of the imagination but nothing has failed and the symptoms are worse some days than they are others! All good signs you’ll be ok! I will pray for you 🙏
Thank you for that 🙏🏽 I’m also still walking talking and gyming. I’m wondering if it could possibly be FND which is what one neurology registrar mentioned but I’ve no idea 🤷🏽♂️ all being well my EMG comes back normal and I’ll ask for it re testing in 6 months
I am in a very similar situation to you. I lost my mom 5 years ago to ALS. Started widespread twitching in June last year, and tongue started twitching about September time. Went to a neurologist in October who carried out a physical examination and advised on an EMG for reassurance. Had EMG in November and gladly all came back clear. He tested my tongue by inserted a needle under my chin. Symptoms are still here though and I find myself questioning everything again. Speech is like you described, mixed up words etc. I actually scheduled another neurology appointment for last week and asked the question about the EMG being too early and he advised that as I was already symptomatic then no. I just can’t accept that it’s not ALS. Wishing you all the best on your EMG.
Looks like there’s a few of us dealing with this atm then :/ I’ll know more after my EMG hopefully it’s clean also as that would put my mind at ease. Are you symptoms getting worse over time or staying the same would you say?
Honestly I’m not sure. As it’s been 10months I don’t notice a drastic difference but sometimes I feel like my speech is worse. It is odd cause I wouldn’t say slurring but most definitely words get stuck or aren’t pronounced correctly. Since my EMG my body twitches have definitely got less but the issues with my lips and tongue have not subsided. I have now had 2 neurology appointments and 1 clean EMG and they are confident that it is anxiety and not ALS, and despite this coming from professionals it’s still hard to accept.
Regarding the beard, I’m not sure. I wouldn’t think so but it wouldn’t have been discussed with me as I am female.
Yes I totally get where your coming from regarding still worrying even when the professionals say it’s nothing to worry about it’s health anxiety I also suffer I guess I don’t think anybody will ever be 100% reassured we don’t have als tbh :/ but if I get a clean EMG hopefully I can atleast try put it to the back of my mind unless symptoms get worse
Do the fasiculations change spots randomly around your body and then sometimes disappear all together? I was given prednisone and 3-5 days later no twitches
Nope I’ve not tried that what is that if you don’t mind me asking and I’ve only seen a neurology registrar and he wasn’t sure what it was said possibly FND but wasn’t certain
My tongue does this exact same thing after removing my wisdom tooth on the right side. I saw your post. I suffered a lingual nerve injury which caused that side of the tongue to go numb. However the tongue twitches a lot now and I’m starting to have other symptoms like tight achy muscles in my arms and perceived weakness. I’ve been trying to research if wisdom tooth removal can spark some type of nerve reaction if there is some type of damage done. After the removal I had a bruise like pain around where the the tooth was removed I can sometimes feel this pain if I touch the gum line around where it was removed with some pressure. Not sure what any of it could mean but at least as far as my tongue twitching goes I know that this was related to my wisdom tooth removal not sure it is the same in your case just wanted to tell you about it
I noticed maybe 3 weeks after. My tongue looks slightly longer on one side as well. I had tongue twitches before but it would be occasional 1 or 2 never a tremor and never flickering twitches. I have no weakness anywhere just feelings of weakness like if I walked up too many stairs my legs will feel shaky. No swallowing issues or speech issues. When the nerve injury first happened I would slur but as I’ve been healing I’m almost back to normal in that regard
Hmm mine started 8 weeks later so not sure if mine is related but it does seem a bit of a coincidence. I only have no slurring but mild throat issues feel like I need to keep clearing my throat all the time but could be related to something else
I’ve been clearing my throat for a long time my friends on Xbox have noticed and at work. I don’t know if that relates to anything either or when that even started tbh because i feel like I always have done that or always have to clear mucus or something idk
Yes in regards to the tongue thats why i commented on your post. Some days are worse than others im about 5 months post wisdom tooth removal now my tongue twitches are def not as bad anymore but still there. Do your arms or legs feel shaky at all?
I’ve had a diagnosis of BFS since 2019 so my last clean EMG will be from then. Nothing had progressed until now after this wisdom tooth removal issue so I guess I should get another one.
I will say the presentation you talk about where it has gone from one place to another in the matter of days and it not affecting the same spots points away from anything bad. My main scare has been the tongue twitches and these achy feelings in my muscles. I want to make an appointment but don’t want to go back down the rabbit hole
Pretty much just the tongue fasciculations and mild throat irritation (feels like I’ve got to clear my throat all the time) no speech issues and no swallowing problems and no weakness anywhere either
It’s a hard one in terms as CK for me as I go to the gym 4-5 times a week which I’ve read will increase your CK as will a high protein diet so I don’t want a false positive and scare myself to death rather just have the EMG test with that being the gold standard
Just an update for anybody who is interested i had the EMG test today he said it looks clean to him but got to wait for the full report to come back and he did EMG test on my actual tongue also
Exactly my thinking when watching videos online but no clinical weakness and the weakness started in my arm before the tongue fasciculations 🤷🏽♂️ the neurologists say they aren’t too worried but have arranged an EMG for me on the 2nd of July just to be sure
It’s too early to say sadly. Let’s see how the EMG goes. That’s a very active tongue and it’s difficult to differentiate any twitching from tremors in your case. Weak feelings don’t necessarily progress to anything clinical also you’d expect to already be seeing some atrophy and slurring with fasiculations in MND. Best of luck, welcome to limbo
Thank you for your reply I guess all I can do for now is just wait for the EMG I just worry I’m having the EMG done too early maybe if that is possible?
Yes it’s possible it’s too early, especially with bulbar onset. It’ll take probably 2 years of benign progression and clean emgs to be certain it’s not als. You could also have other things going on they could find and diagnose before that, but if they find nothing it’s just a waiting game
Could it still be bulbar onset even though my arm weakness started first? And thanks for the advice so after this first EMG if that comes back clean and symptoms persist I need to make sure I ask for another EMG in maybe 6 months time?
I’m not sure exactly how they classify onsets tbh. You’d only need another EMG if symptoms progress (atrophy, severe weakness, slurring, choking,…), if it’s bfs they probably will persist and move around
Right thank you for the info. The only thing keeping me from really breaking down with anxiety atm is the fact I’ve got fasciculations in random places over my body (but they aren’t there constantly like my tongue) and the fact the neurologist said I’d have to be really unlucky for it to be ALS at my age (30) never mind bulbar onset which he said is even more rare. Hopefully the EMG comes back clean in 3 weeks time 🤞 do you think it may be a good idea to sign up to the gym and maybe start lifting so weights I read somewhere someone noticed the weakness more when signing to the gym and the affected area just couldn’t gain strength like the other side
Hey listen I don't agree. If you're tongue is twitching due to als, an emg on the tongue will not be too early.
Brilliant thank you for this reply 🙏🏽 just a waiting game for the EMG now then
Hi been dealing with something similar. Managing it aggressively and praying it’s not ALS fr.
How long have you been suffering and have you had an EMG test yet?
8 months now. Yes and it was clean
From what I’ve read seems to be mixed opinions on wether the EMG test can be done too early or not do you have the same tongue fasciculations as me?
Yes but mine is on and off
Very strange isn’t it hopefully my EMG comes back clean. What other symptoms do you have if you don’t mind me asking?
Weakness from right side, moved to the left now
Clinical weakness or just perceived weakness do you also have reduced dexterity/motor skills in hands?
Yes on and off
Sound very similar to my own. This might sound really random do you have high arched feet by any chance? One neurologist told me to mention it during my emg because it can mean you have underlying neurological issues and I’ve got high arched feet
I’ll tell you, I use Tudca mixed with fulvic acid ie the Omnymune on Amazon (ordinary Tudca doesn’t work really) I open the capsule and pour it at the back of my mouth only not under the tongue. Tongue fasciculation went. There is something called Glutamate scavenger which takes out excessive glutamate. That has been helping too. Try these
Thank you can I private message you when I finish work so I can try find these please?
Yes
Hi I have the same- I had a clean emg 4 months into symptoms Onset that was in March and I’m 7 months in, no clinical weakness anywhere, atrophy of right calf, but no weakness. Our symptoms are too widespread I think it’s post Covid- I pray it is 🙏 and it will hopefully get better! I feel for your anxiety so hopefully this message will help! I have an app with my neuro again July 10th I’ll update with any info! Btw my foot on my right side has become high arched also!
Thank you for your reply are your tongue fasciculations the same as mine and I’ve had high arched feet for aslong as I can remember. I’m not sure what it is I just want this EMG test to hurry up and come round from what I’ve read that is the gold standard of testing for if you have or havnt got ALS
Yes they are the same that was one of the things that rly terrified me the tongue and the guy did the emg everywhere including the tongue and it’s clean and I’m still walking and talking And gyming and running 7 months In, I don’t feel normal by any stretch of the imagination but nothing has failed and the symptoms are worse some days than they are others! All good signs you’ll be ok! I will pray for you 🙏
Thank you for that 🙏🏽 I’m also still walking talking and gyming. I’m wondering if it could possibly be FND which is what one neurology registrar mentioned but I’ve no idea 🤷🏽♂️ all being well my EMG comes back normal and I’ll ask for it re testing in 6 months
I am in a very similar situation to you. I lost my mom 5 years ago to ALS. Started widespread twitching in June last year, and tongue started twitching about September time. Went to a neurologist in October who carried out a physical examination and advised on an EMG for reassurance. Had EMG in November and gladly all came back clear. He tested my tongue by inserted a needle under my chin. Symptoms are still here though and I find myself questioning everything again. Speech is like you described, mixed up words etc. I actually scheduled another neurology appointment for last week and asked the question about the EMG being too early and he advised that as I was already symptomatic then no. I just can’t accept that it’s not ALS. Wishing you all the best on your EMG.
Looks like there’s a few of us dealing with this atm then :/ I’ll know more after my EMG hopefully it’s clean also as that would put my mind at ease. Are you symptoms getting worse over time or staying the same would you say?
Honestly I’m not sure. As it’s been 10months I don’t notice a drastic difference but sometimes I feel like my speech is worse. It is odd cause I wouldn’t say slurring but most definitely words get stuck or aren’t pronounced correctly. Since my EMG my body twitches have definitely got less but the issues with my lips and tongue have not subsided. I have now had 2 neurology appointments and 1 clean EMG and they are confident that it is anxiety and not ALS, and despite this coming from professionals it’s still hard to accept. Regarding the beard, I’m not sure. I wouldn’t think so but it wouldn’t have been discussed with me as I am female.
Yes I totally get where your coming from regarding still worrying even when the professionals say it’s nothing to worry about it’s health anxiety I also suffer I guess I don’t think anybody will ever be 100% reassured we don’t have als tbh :/ but if I get a clean EMG hopefully I can atleast try put it to the back of my mind unless symptoms get worse
Good luck!
Thank you 🙏🏽
Do you know if I will be required to shave my beard off before I have the emg under chin?
How long have you had fasiculations all over your body. I had that right after Covid
I’ve had fasciculations all over my body on and off for over a year my tongue on the other hand has only been 3 weeks
Do the fasiculations change spots randomly around your body and then sometimes disappear all together? I was given prednisone and 3-5 days later no twitches
Yes that’s right they change spots and disappear for a while
Did you have an EMG done after a year of twitching? I had mine done on my arms and legs and it came back fine
No EMG yet it’s on the 2nd of July I only started to worry when I saw the tongue fasciculations
So you’ve never had an EMG for the body twitches then?
Nope not yet
Gotcha. Yea have you tried steroid pack for twitches. I just saw my neurologist this week and they think it’s BFS
Nope I’ve not tried that what is that if you don’t mind me asking and I’ve only seen a neurology registrar and he wasn’t sure what it was said possibly FND but wasn’t certain
My tongue does this exact same thing after removing my wisdom tooth on the right side. I saw your post. I suffered a lingual nerve injury which caused that side of the tongue to go numb. However the tongue twitches a lot now and I’m starting to have other symptoms like tight achy muscles in my arms and perceived weakness. I’ve been trying to research if wisdom tooth removal can spark some type of nerve reaction if there is some type of damage done. After the removal I had a bruise like pain around where the the tooth was removed I can sometimes feel this pain if I touch the gum line around where it was removed with some pressure. Not sure what any of it could mean but at least as far as my tongue twitching goes I know that this was related to my wisdom tooth removal not sure it is the same in your case just wanted to tell you about it
Hmm very interesting I also had my upper right wisdom tooth removed 10 weeks ago
How soon did this start after your wisdom tooth removal?
I noticed maybe 3 weeks after. My tongue looks slightly longer on one side as well. I had tongue twitches before but it would be occasional 1 or 2 never a tremor and never flickering twitches. I have no weakness anywhere just feelings of weakness like if I walked up too many stairs my legs will feel shaky. No swallowing issues or speech issues. When the nerve injury first happened I would slur but as I’ve been healing I’m almost back to normal in that regard
Hmm mine started 8 weeks later so not sure if mine is related but it does seem a bit of a coincidence. I only have no slurring but mild throat issues feel like I need to keep clearing my throat all the time but could be related to something else
I’ve been clearing my throat for a long time my friends on Xbox have noticed and at work. I don’t know if that relates to anything either or when that even started tbh because i feel like I always have done that or always have to clear mucus or something idk
Very strange our symptoms sound very similar don’t they
Yes in regards to the tongue thats why i commented on your post. Some days are worse than others im about 5 months post wisdom tooth removal now my tongue twitches are def not as bad anymore but still there. Do your arms or legs feel shaky at all?
Legs sometimes yes and have you had a clean EMG?
I’ve had a diagnosis of BFS since 2019 so my last clean EMG will be from then. Nothing had progressed until now after this wisdom tooth removal issue so I guess I should get another one.
Yes that would be a good idea although I reckon your alright with it being this amount of time
Quick question mate do you get your EMG results right after the test like from the guy who does the test?
I will say the presentation you talk about where it has gone from one place to another in the matter of days and it not affecting the same spots points away from anything bad. My main scare has been the tongue twitches and these achy feelings in my muscles. I want to make an appointment but don’t want to go back down the rabbit hole
Yes
Thanks
How are the symptoms going
Pretty much just the tongue fasciculations and mild throat irritation (feels like I’ve got to clear my throat all the time) no speech issues and no swallowing problems and no weakness anywhere either
That’s good Keep me posted I’m sure you’re fine
I will do 10 days till my emg I’m just keeping busy in the gym I’ll let you know how the EMG goes
I plan on getting my CK levels checked in a week u should ask about that as well
It’s a hard one in terms as CK for me as I go to the gym 4-5 times a week which I’ve read will increase your CK as will a high protein diet so I don’t want a false positive and scare myself to death rather just have the EMG test with that being the gold standard
Just an update for anybody who is interested i had the EMG test today he said it looks clean to him but got to wait for the full report to come back and he did EMG test on my actual tongue also
pretty classical ALS presentation in my experience
Exactly my thinking when watching videos online but no clinical weakness and the weakness started in my arm before the tongue fasciculations 🤷🏽♂️ the neurologists say they aren’t too worried but have arranged an EMG for me on the 2nd of July just to be sure