bulbar question for geo/judith

[olly]

as you both started with bulbar onset pls i thought you both may be the best to ask my question.
i have had jaw problems since the start of the year,some slight swollowing going back 18mths ago. i have started getting what i know as hemifacial spasms in my right lower face/jaw. from what ive read normally they effect the whole of the face starting round the eye and are rare in the right side of the face. i would say it is myoclonus spasms as it is a sustained contraction lasting for 30seconds but feels longer and it pulls the right side of my mouth inwards towards the left. it is more distressing than painfull and can happen if i suddenly cough,sneeze or laugh. i found out hemifacial spasms/myoclonus in the face can happen in pseudobulbar palsy,also forgot to add after the spasm my face goes all weak like i have had a stroke.
have either of you had this? also i have not noticed so far weakness or stiffness of the tongue, would this automatically be effected if i have other bulbar symptoms?
my speech can be slurred if i am tired or if my jaw is bad i have problems with articulation.
any help/info would be most appreciated
thankyou
caroline

 

[Geo]

Here we go with Clonus again . Clonus is a continuous rithmic spasm Myoclonus is broke down to (Myo means many ) Clonus is a continuous rithmic motion . So you put those together you have many rithmic motions . You could have TMJ Transmandibular Joint Syndrome . Only Clonus ive noticed is when im driving my golf cart and i reach out to reach the pedals ,i hyper extend my leg and foot then i get a rithmic tremor .This is what is called an action tremor or action clonus . Theres a video on the net with Myoclonus ,this guy has what they call Myoclonus of the Tongue . It never stops that rithmic motion . When im tired i'll get a Crazy feeling in my tongue like it wants to spasm but doesnt . Im going to look for Hemifacial spasms .i'll get back to yuh .Geo

 

[Geo]

Microvascular Decompression . This is the cure for Hemifacial spasms .its a surgery for removing the Pressure on the 7th cranial nerve by the Blood vessel . Geo

 

[olly]

geo

thankyou geo. it is definatley spasms or clonus of some kind and is usually activated by any sudden facial movement but just in the right side of the jaw/mouth and when my jaw is at its stiffest. i do know the clonus is worse in my right side of the body .
i'll have to wait till i see my neuro again but if it gets worse i can make an appointment with my neuro rehab doctor.
take care
caroline

 

[Judith]

Hi Caroline,
I haven't experienced any of the hemifacial/myoclonus spasms that you have mentioned. My tongue is very weak. It is very hard to eat because I can't manipulate my tongue.
I believe the tongue weakness/stiffness is part and parcel of the bulbar symptoms.
My speech was slurred in the beginning and articulation was bad. Now, there is no speech to be slurred, or articulated

Hope this helped,
Judith

 

[olly]

omd?

i have found what my problem may be,omd(oralmandular dystonia) this causes a severe forcefull contraction in the lower face/jaw causing the mouth to go into a abnormal position. it is a secondary symptom related to many neurological conditions including parkinsons,ms and pseudobulbar palsy.
thankfully it does not occur too ofton and usually with sudden facial movements,however yesterday when i moved my neck to the right too much it happened. my occupational therapist is back from maternity leave and is coming next thursday so i will ask about it and about the worsening loss of contraction in my left lower leg/possible muscle loss in foot and ankle.
take care
caroline:-D

 

[olly]

sorry i am spelling it wrong it is oromandibular dystonia,i really need some help with this.

 

[sral]

Is this a PLS related symptom?

 

[Judith]

Maybe this website will help you.
http://www.dystonia-foundation.org/pages/oromandibular_dystonia_more_info/48.php

This website also states:
"Oromandibular dystonia should not be mistaken for temporomandibular joint disease (TMJ), which is an arthritic condition."

 

[olly]

thanks judith

i have looked at a few places about tmj/omd. from what i decribe,forcefull contraction causing the mouth to contort to one side(like my face on the right side is having a seziure) with sudden movements and the fact that if i move my neck too far to the right it does it also indicates omd rather than tmj.
my therapist is coming next week so i will ask her about it and check my ankle/foot out. may need to go see my neuro but i try to put these things off till they get bad.
take care
caroline

 

[olly]

bulbar info needed again

firstly, there is someone with bulbar onset als who has the same spasms in the right lower face the same as me called rose.
i have been describing to her how my tongue is now being effected.
i have tingling and my tongue feels bigger than what it is,this gets worse by the end of the day.
also under my chin feels sore deep inside and under my tongue, like a strained feeling and i have a slight feeling like my tongue has a spasm at the back wanting to force my tongue out of my mouth. could this be spasms? but when i look at my tongue i can see lots of tiny twitches. could this be harmless twitches/iritability as seen in the body with pls but no atrophy?
the speech therapist is coming to see me on monday 14th july.
i am very confused and upset by all this, any help would be very appreciated from those of you with pseudobulbar palsy.
take care
caroline

 

[Judith]

firstly, there is someone with bulbar onset als who has the same spasms in the right lower face the same as me called rose.
i have been describing to her how my tongue is now being effected.
i have tingling and my tongue feels bigger than what it is,this gets worse by the end of the day.
also under my chin feels sore deep inside and under my tongue, like a strained feeling and i have a slight feeling like my tongue has a spasm at the back wanting to force my tongue out of my mouth. could this be spasms? but when i look at my tongue i can see lots of tiny twitches. could this be harmless twitches/iritability as seen in the body with pls but no atrophy?
the speech therapist is coming to see me on monday 14th july.
i am very confused and upset by all this, any help would be very appreciated from those of you with pseudobulbar palsy.
take care
caroline

Hi Caroline,
I sure hope your speech therapist can help you. Maybe you should make an appt. with your neuro, though. The only symptom you have mentioned, that I have, is when I stick out my tongue I see tiny twitches on the tip and sides. I can't feel anything though.
My neuro has never mentioned anything about it to me.

Judith

 

[patricia1]

firstly, there is someone with bulbar onset als who has the same spasms in the right lower face the same as me called rose.
i have been describing to her how my tongue is now being effected.
i have tingling and my tongue feels bigger than what it is,this gets worse by the end of the day.
also under my chin feels sore deep inside and under my tongue, like a strained feeling and i have a slight feeling like my tongue has a spasm at the back wanting to force my tongue out of my mouth. could this be spasms? but when i look at my tongue i can see lots of tiny twitches. could this be harmless twitches/iritability as seen in the body with pls but no atrophy?
the speech therapist is coming to see me on monday 14th july.
i am very confused and upset by all this, any help would be very appreciated from those of you with pseudobulbar palsy.
take care
caroline

Yes I ave the same symptoms When I yawn I get a pain and bulge under my chin very painful

Pat