MND/ALS can’t stop checking tongue pls help

[lily1]

I’ve read the sticky on ALS and I’ve had this fear on and off for years but recently it’s come back with avengence.

I’m constantly checking my tounge to see if it’s straight and now checking it for twitching/movement on the surface.

I read that if there is the classic fascilations on my tounge then I’d have other symptoms like slurred speech so it’s pointless keep checking it if something was wrong I’d 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]

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]

If you read the sticky, what is your concern? :shrug:

Positive thoughts

[lily1]

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.

[lily1]

Thank you Yourboymj99 I’m going to try real hard to stop but it’s like I think of I don’t I’ll miss something for I guess it’s like trying to reassure myself but as you say it only makes me feel more anxious. You’re right I’d notice slurred speech so checking for twitching and if my tongues straight is pointless

[ankietyjoe]

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]

I probably worded it wrong it’s like an OCD it’s a compulsion to check that I can’t control. I wish I could stop but I find it very hard.

[Quinn1]

Maybe seek therapy for your OCD and anxiety
It must be ALS month.:winks:

[lily1]

Thank you.

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

[Seymour]

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]

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 hasn’t 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 .