Status
Not open for further replies.

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
in the middle slightly to the right of my tongue is were i get the main twitching.
when it twitches that area sinks down,it is like a rounded v shape.
is this a fa ssiculation?
can you have benign tongue fassiculations in pls?
i know i now have other bulbar symptoms and a speach therapist is coming to see me in less than 2wks. but i am worried and confused about this. also my tongue feels bigger and my son has noticed i am talking like i have a lisp.
take care
caroline:(
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Hi Olly, just thought i would share my experience with tongue twitching. I had first felt a tightening feeling under my tongue and on the left side of my tongue, it felt like it was swelling. Months later it started twitching and vibrating on the side. Then my tongue was dented on the left and looked lopsided. A year later my right side started in and that is when i started the big rolly pollies, like the bag o worms they describe. Half a year later both sides of my tongue look like someone took one of those carving tools and carved the sides of my tongue. The rolly polly only when i am really stressed but they always twitch. Luckily i cant feel it because since it does it all the time it would drive me crazy. I stick my tongue out a little and both the sides twitch really fast and dont stop. Now i have facial thinning, tongue facics, jaw cramps but my tongue is still strong as ever! I do bite and rest my teeth on my tongue a lot, and my tongue sticks to the top of my mouth and i think that is why it feels funny. I am having a hard time with my S'zzzzzzzzzzzsss.. But other than that it has been almost two years since the first tongue twitch and my tongue is hanging tough!
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
thankyou sammantha. i too have noticed and said i have a pulling feeling in the skin underneath the tongue. there are twitches in a few places but one place in paticular and that area sinks in more,but in general my tongue is lumpy. i can move my tongue about ok but it does feel a little weaker,especially moving food about when eating. i know i have umn bulbar symptoms,had majority umn symptoms in my body for 9yrs now. i'll have to wait till 14th when the speach therapist comes.
take care
caroline.:)

ps to anyone.
when a tongue is in a resting position the way a neuro looks could there be any twitching or movement within the tongue if it was a healthy one or would it be completely still?
thats my last question.........honest. lol.
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
Sammantha:

It sounds as though you have had tongue issues for quite a while, but yo do not yet have tongue weakness? Is this the pattern in ALS? I thought that weakness would certainly accompany the other symptoms you mention, especially after such a long time.

Patricia1, who writes on these boards has had bulbar problems for a while. I am curious, Patricia, how long did it take before you experienced tongue weakness from the first sign of bulbar symptoms?
 

lovelily

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
City
Northern
Hi Sammantha!

I thought while you were answering a couple of questions you would be kind enough to give your opinion on this.

A few months back I had a very strange feeling in my tongue. That is was getting bigger in my mouth. kind of like swelling, and just abnormal. So if I went to speak my tongue felt as if it was not coordinated.

I told my neurologist a few days later, and because I have issues with 'TIA' he thought that may be the cause. But now months have gone by, and I have had 2 fasciculation (small) and fleeting, on one side of my tongue. Same side. One on top. One underneath, same side. Now I am wondering if the strange feeling was a prelude to the fasciculation?

take care
lovelily
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
lovily

i can not tell you for sure but i only noticed my tongue fassics because my tongue felt bigger and i checked it out,otherwise i would have not known i had tongue fassics. since my tongue has felt bigger it has been noticed i sometimes have more of a lisp.
these new problems have only just developed after 6mths with umn bulbar symptoms like spasms in jaw,throat,hemifacial spasms,fassics along jaw line and severe chewing problems. i am hoping the fassics are benign and may be due to iritability because of the umn bulbar symptoms.
take care
caroline:-D
 

lovelily

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
City
Northern
Thanks Caroline for your reply! :)

take care
lovelily
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Sammantha:

It sounds as though you have had tongue issues for quite a while, but yo do not yet have tongue weakness? Is this the pattern in ALS? I thought that weakness would certainly accompany the other symptoms you mention, especially after such a long time.

Patricia1, who writes on these boards has had bulbar problems for a while. I am curious, Patricia, how long did it take before you experienced tongue weakness from the first sign of bulbar symptoms?

I never really checked for weakness after noticing my slur However when I when to a speech therapist She tested me with blowwing up my cheeks and she would poke them and I couldnt keep the air in my cheeks. She asked me to touch my tongue to my cheeks and then I noticed I had weakness. But I would imagine I was slurring from weakness. So I guess it must happen at the same time ,and gets worst Now my tongue hardly moves.
Pat1
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
Patricia:

Thank you for answering. It makes sense that when there is slurring, that implies the tongue is not functioning properly, and thus the slurring.
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
I really do not feel i have tongue weakness so much as i have mouth and jaw weakness. The neuro has me do the whole tongue side to side thing and i can do it. Now i know it is a little bit lazier because i will bite my tongue more often because it does not move as fast and sometimes my speech gets tripped up but it is not to the point where a doctor would say there is weakness in your tongue. I have been made fun of a few times for slurring my words! But all of that is happens now and then it is not every time i speak, and i have found that your body makes up for things gradually without you realizing! For instance, for two years i noticed that i can not just guzzle a drink if i do it goes right into my windpipe, what i do is take a sip, hold it then swallow it like it was food. Its funny how you can look back at things and say That is why! Like when i would get muscle spasms for a long time then they died down and now i have this muscle disorder and i never would have put the two together. Happy Fourth of July!
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi sammantha

i can go back to 18mths ago when the swallowing problem started. i have had mainly umn desease/body for 9yrs now and the umn bulbar symptoms started to get bad 6mths ago. through out my illness i have had slurred speech when very tired physically and mentally. but recently since my tongue felt strange,kind of bigger my speech is more lispy. i can see the fassics are more in the middle part of my tongue,the tip and back look ok , its the middle were there is constant twitching and wriggling movement and that area tends to sink in like there is atrophy or weakness. i too bite my tongue,it does not move out of the way quick enough but sometimes my jaw can just snap shut and takes my tongue by supprise,usually the left side which is odd as the jaw spasms are worse on my right side. i can move my tongue about like you said but i can feel weakness in the middle and moving food about with my tongue. i suppose i am in the early stages with this and will have to wait and see. i am hoping it is just umn involvement and the fassics are just iritability because of this. we live in hope.
take care
caroline:-D
 
Status
Not open for further replies.
Top