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View Full Version : MND/ALS canít stop checking tongue pls help



lily1
19-10-19, 14:04
Iíve read the sticky on ALS and Iíve had this fear on and off for years but recently itís come back with avengence.

Iím constantly checking my tounge to see if itís straight and now checking it for twitching/movement on the surface.

I read that if there is the classic fascilations on my tounge then Iíd have other symptoms like slurred speech so itís pointless keep checking it if something was wrong Iíd know without checking my tounge.

Is this true? Does the twitching start first

Is bulbar onset rarer?

Does anymore else do this did you stop?

Yourboymj99
19-10-19, 16:56
Hi lily1,

Stop checking your tongue. The first symptom of bulbar would be slurred speech. And not occasionally. You would sound like you were holding your tongue as you talk. Everyone would notice. Bulbar does not present with tongue twitching, and yes its quite rare as most cases are distal limb onset. In order to move on from this fear you have to stop checking your tongue for irregularities. Its pointless and only strengthening your anxiety.

Take care

Fishmanpa
19-10-19, 17:02
If you read the sticky, what is your concern? :shrug:

Positive thoughts

lily1
19-10-19, 21:15
I think my main concern is anxiety is making me think about my tongue and getting ALS. I focus on my tongue and canít stop checking it itís like a compulsion. I wasnít sure if twitching was the first symptom, before anything else thatís what I keep thinking Iím seeing in the mirror,but the first poster cleared that up and said slurred speech would be there.

lily1
19-10-19, 21:18
Thank you Yourboymj99 Iím going to try real hard to stop but itís like I think of I donít Iíll miss something for I guess itís like trying to reassure myself but as you say it only makes me feel more anxious. Youíre right Iíd notice slurred speech so checking for twitching and if my tongues straight is pointless

ankietyjoe
19-10-19, 21:36
I think my main concern is anxiety is making me think about my tongue and getting ALS. I focus on my tongue and can’t stop checking it it’s like a compulsion. I wasn’t sure if twitching was the first symptom, before anything else that’s what I keep thinking I’m seeing in the mirror,but the first poster cleared that up and said slurred speech would be there.

Your anxiety isn't MAKING you do anything. You're focusing, you're checking. That's what you need to stop doing.

lily1
19-10-19, 23:28
I probably worded it wrong itís like an OCD itís a compulsion to check that I canít control. I wish I could stop but I find it very hard.

Quinn1
20-10-19, 03:29
Maybe seek therapy for your OCD and anxiety
It must be ALS month.:winks:

lily1
20-10-19, 08:49
Thank you.

Yes I have been to two CBT sessions and paid for a private therapist nothing works thatís why Iím so fed up. But will try harder.

Seymour
24-10-19, 17:16
My neurologist told me you can’t reliably evaluate tongues when they are completely out. They have to rest or else they will absolutely shake and quiver. He checked mine with a light when it was completely at rest.

Crystal76
25-10-19, 19:36
Hi Lily1 , I have had exactly the same fear . Mine started nearly 3 years ago with the ALS fear .
I have feared many diseases over the years , mainly cancer , until I discovered ALS after my knee started to twitch and this fear hasnít gone away .
I too have studied my tongue constantly to a point I have made my tongue and the inside of my mouth sore . And yes on times it twitches and so does the rest of my body .
I honestly think that anxiety can give you the symptoms of the disease you fear , we are so in tune with our bodies that we feel every little thing , that most people would overlook .
ALS is a terrible disease and a frightening one , but you are not alone . I am really trying to stop checking myself , distraction is my best cure , I hope this helps .