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Serenity Now

This Tongue Thing

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Serenity Now    19

Hi Dr. Okun,

As I mentioned in another post, my tongue moves/quivers on its own.  It does it at rest, when I open my mouth, as well as when I stick it out. 

The intensity has decreased from when i first saw it.  It used to move up/down more when it was stuck out.  It happens all day, so i'm not sure if that's why it's less intense. 

I noticed it 4 months ago, although it could have done it longer since I don't feel it.  

Could this possibly be lingual dystonia?

It will take a couple seconds when you start the video.  When it curls on my lips, that was the only time i moved it, to show how it quivers. 

Thanks in advance!

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Dr. Okun    411

This could be a levodopa induced dykinesia from the PD medication; also these can happen in people without PD on dopamine blockers.

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Serenity Now    19

Thanks for your answer!  I have no dx yet, so haven't been on levodopa. I also have never been on any medication.  

For my neuropathy, I take the supplements Alpha Liptic, CoQ10 & Carnitine. But this tongue thing started months before it, and it's still constant.  

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Dr. Okun    411

If you are not on any medications for Parkinson's disease or dopamine blockers you should see your neurologist as this could be a dystonia.

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Serenity Now    19

If the MDS I'm going to see finds that this tongue movement is dystonia, would that make me more suspectible to cervical dystonia?  

I first started getting neck stiffness that was sporadic, so I didn't think much about it.  In recent weeks, it's happening everyday for most of the day.   

Yet now I'm getting these painful, intense pressure pains in the back of my neck.  It feels tight with a slight pulling sensation.   It happens for hours, and nothing helps to ease the pain.  Months ago,  someone told me one of my shoulders is lower, and I lean a little to one side, but not sure if it's related.  

Thanks in advance. 

 

 

 

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Dr. Okun    411

It is possible it could be craniofacial dystonia or sometimes referred to as Meige syndrome; seeing an expert is a great idea.

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Serenity Now    19

I don't blink much nor do my eyelids close uncontrollably, which is what I thought what part of Meige is.   Thanks again for your answer!   

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Dr. Okun    411

There are many forms of dystonia and sometimes even psychological symptoms can cause dystonia.  It is best not to speculate, but to be examined as you can have limited tongue dystonia from many things including for example neuroacanthocytosis.

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Serenity Now    19

Thanks.  Funny you mention neuroacanthocytosis because I read about it months ago because some symptoms match, but I don't have chorea or psychiatric issues.  I won't speculate anymore. 

People like me, in medical limbo, have to speculate and do our own research because some doctors are quick to say it's in your head and dismissing patients' symptoms before taking symptoms seriously and excluding all causes.  Your patients are fortunate you are not like that!  

The two doctors I saw didn't care what this tongue thing is.  In addition to my blurry vision and unsteadines on feet, this is a concerning symptom because it is not normal.  Yet I could care less about some symptoms, like how I lost my sense of smell so many years ago and my arm stopped swinging last summer 

Thanks again for your time and answers.  

 

 

 

 

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Dr. Okun    411

One other thought is that some cases of Sydenham's chorea or autoimmune/paraneoplastic can cause tongue issues.  Something to ask your doc about.

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