Any Advice Please on Tongue clicking and Mouth smacking

[Molly90]

Hello,
I hope there is someone on here who can give me some help. My husband was diagnosed a month ago with MND with FLD. He has fasciculations in all four limbs with wasting in his hands and upper arms. The Neurologist was not as convinced about fasciculations in his tongue when he examined him this time as he was in July.
But, there is the strangest thing going on with his tongue and mouth, it has been going on for about 18 months and the best way I can describe it is he makes clicking noises with his tongue, and smacking noises with hsi mouth. It happens sometimes in the day but especially in the evening when he is relaxing. It goes on for hours with just a brief 5 minutes where it stops. He says its like his tongue just doesnt want to keep still. I have mentioned it to the Neurologist, Doctors and again with our GP this morning but nobody seems to have an answer as to what it is. I have searched the intenet and still can't find anything. Has anyone got any ideas or experienced anything like this? He can talk, eat, has no problems with infections of the mouth or biting etc.

Springtime x

 

[Molly90]

Hi All,
I was hoping to have some ideas from someone as to what it could be, but alas it seems nobody relates to what is happening to my husband. Another longshot but there is a post on here from 2006 called "smacking" by a person called Terri, I see there have been no postings since 2013. What he describes seems very similar to what is going on with my husband, so would like to find out more from him if possible. Does anyone know if he is still on here?
Regards Molly

 

[Molly90]

Hello,
I hope there is someone on here who can give me some help. My husband was diagnosed a month ago with MND with FLD. He has fasciculations in all four limbs with wasting in his hands and upper arms. The Neurologist was not as convinced about fasciculations in his tongue when he examined him this time as he was in July.
But, there is the strangest thing going on with his tongue and mouth, it has been going on for about 18 months and the best way I can describe it is he makes clicking noises with his tongue, and smacking noises with hsi mouth. It happens sometimes in the day but especially in the evening when he is relaxing. It goes on for hours with just a brief 5 minutes where it stops. He says its like his tongue just doesnt want to keep still. I have mentioned it to the Neurologist, Doctors and again with our GP this morning but nobody seems to have an answer as to what it is. I have searched the intenet and still can't find anything. Has anyone got any ideas or experienced anything like this? He can talk, eat, has no problems with infections of the mouth or biting etc.

Molly x

 

[Nikki J]

Sorry no one in my family has had that and it does not seem to be a common issue. As you saw Terri did not get much feedback either. Terri's PALS died and they have not been back since they were trying to sell their van

 

[Diane H]

It sounds like Tardive dyskinesia but the neurologist and GP should have recognized that immediately. It is usually associated with drugs used for mental illness and Parkinsons but also drugs for gastrointestinal problems.

 

[Molly90]

Hello Diane,
Thank you so much for your input. I have never heard of Tardive Dyskinesia, so have just googled it and it certainly reads as though there may be a possibility it is this as well. Husband is not on any drugs etc only Riluzole which he has only been on for 2 weeks. However, I read that it can affect people who have been on meds targeted at emotion and lower cognitive function which as I said my husband hasn't, but as he suffers from FLD with MND I am thinking that his motions and cognitive functions are affected by his FLD so could there be a link. We are going to The Walton Centre in Liverpool next week for husbands Multi appointments with various experts so I will take along the information and ask if this is a possibility.

Regards Molly