neuro says sjogrens & jaw spasm's?

[lindar]

I saw my neuro this week.  He believes my neuro problems are from sjs.  (even though my rheumy does not).  I'll get a second opinion from another rheumy today.  The good thing is that most of my doctors now agree that I should go to UCLA for an evaluation. 

I mentioned the following symptom to my neurologist the other day and he looked completely stumped....

I have muscle spasms sometimes in my legs etc.  I think there are a lot of reasons and causes for spasm's, however,  I have a strange spasm in my jaw at times.  It is usually when I'm falling asleep, waking or asleep.  My jaw will quickly snap shut and open when this happens.  If my cheek or lip happens to be in the way, I bite them.  (ouch!)

Anyone else have this? 

[jdryer]

Hi,
I have had it happen also & other times my arms would jerk.
j

[Patze]

Hi lindar,

I don't have that happening, but I sure hope that the doctors at UCLA can give you some answers (and lucky you to have doctors that are willing to work with you and send you to UCLA).

Take care -

Patze

[lindar]

Thanks for the replies. 

I am excited about the possibility of going to UCLA and I am lucky that my doctors are willing to support that.  I'm not sure my rheumatologist would support it but I have support from 2 neurologists, another rheumatologist and my internist.  Now I just need to wait to see if the insurance company approves it. 
I hope that an evaluation there can help me "connect the dots".  I do think that my cognitive symptoms, continued joint problems, tinnitus and neuropathy are all connected to sjogren's and I'm not sure plaquanil is working for me right now.  I would love to go to Johns Hopkins but my insurance company will cover only UCLA if approved.

[Stillinlimbo]

Lindar,
Yes yes! I have that jaw jerk! I wake up in excruciating pain because I have all but bitten my tongue off! Oh, thank God I am not nuts! Well, half nuts. I pray we both get relief, and answers. Going to neuro in Phila tomm, to see what I have. MS, or SJS, or some other disease.
Cathy

[DesignerS]

Yes! Linda, I have that same jaw "thing."  I have been afraid to tell anyone  I have wondered if I am having a seizure.  And yes, my cheek is always right there to get bit so hard.  I hope you can go to UCLA and get the answers you need.  Let us know if you find out what the jaw spasm is all about:)


Designer

[Tryfan]

Hi, a late input to this but I felt I had to say, me too!  I was diagnosed with TMJ first, then Thoracic Outlet syndrome and now, Sjogrens which I think links everything together.  The jaw spasms I have often take place at night and I bite the side of my face.  I wore a mouthguard for a while which relaxed the muscles and stopped me injurying myself.  However, I have noticed that these spasms seemed to be cyclical and are not there all the time.  I am sure a stressful or hormonal time is linked to it for me, anyway so I try and anticipate it happening now and massage my jaw before going to bed.  I know it will only last a few days and then goes away.  Is this the same for you, I wonder? 

[Stillinlimbo]

Interesting idea, maybe it is cycle related. I no longer get a period but I still do get the other symtpoms. I'll have to see if that is connected and let you know
thanks
cathy

[lindar]

WOW... As usual I was so excited to read that others have this crazy symptom.
As with others it doesn't happen all the time.  It might happen often for a week and then not happen for awhile.  But then it comes back again.  It seems that many of my odd symptoms do this. 
Thanks for the replies. 

[JJ]

I did this often in my teen years...not so much now but been accused of grinding my teeth...but it is a strange feeling to just

have your mouth clamp down with out you even trying to do it..last time, i bit my tongue..it was pierced

at the time...needless to say broken tooth.

JJ

[jdryer]

Hi,
I have some troubling symptoms & no diagnosis:
Insomnia
When laying there trying to sleep, my head/face feels like it's "buzzing", sort of vibrating like on a massage chair.
Nightmares
Dull headache
Ackey joints
Had lots of different blood tests, nothing significant or definitive
Gas
Anyone have such things & what do you do for it ?
j