QUESTION .. tongue/face neuropathy.

[LizPetillo]

I have it in both arms, both legs, my face and tongue.  I am really wondering about the tongue neuropathy.  I have not seen it listed as a sjogrens thing.  I know this manifests differently with different people but

- does anyone else get tongue neuropathy/tingles?
- does anyone else feel like they get hair in their mouth?
- does anyone else feel like their face is tingly .. nose and chin?

Just wondering if these things are sjogrens or something else.
(Heck .. Im always wondering what else I'm getting nowadays)

I don't think it's that bells palsy.  It's not one side of the face, but instead is the nose and chin and tongue.  Tingle tingle tingle .. like when you were a kid and licked batteries.  (yep .. did it once .. an light buzzzzzzzzzzzzzzzzz  all over the tongue.  Kids are idiots!!) 

[SueAnn]

LizPetillo,

I have just started having neuropathy in my tongue, lips and nose area on a regular basis.  I have had it every now and then for the past year, but I didn't know if it was related not until it stared on a regular basis.

I can say that I never licked a battery when I was younger.  lol  I did do plenty of other stupid stuff.

SueAnn

[Shani]

I haven't really payed attnetion to that before my tongue does sometimes tingle.
But never had it occur in my face. (Atleast I think so)

[flutterfly]

lizpitillo~YES! oh my goodness u just explained what i call the ~couple hours after dentist~ feelin' i get! like ur tongue is ~just~ 'bout ta wake up but never does! (has ur taste changed @ all? mine has!) i get weird patches of numb all over my body but as of 'bout a year ago it started happenin' in my face & tongue! MOSTLY on chin & my cheek area (my doc says she thinks its trig.)

but the tounge thing is annoyin'! doc answered the cheek thing but couldn't tell me why my toungue & chin was doin' it! (did nothin' 4 it of course!)

now my dentist had sum info but it did me no good...he says there is so many nerves in the face it would be hard tellin' what causes it!
i wanted ta stick my tongue out & say...FIX IT! but decided against it!

please keep us updated...i would luv ta know what comes of it! i am so sorry ur dealin' w/the almost awake tingles!

~*funky tounged flutterfly*~ 

[gphx]

Yes. All those. The tongue thing was thankfully brief but the others are present to lesser or greater degree 24/7. Interestingly, alcohol consumption makes them all go away for a while for a few hours of peace. 

[marycr]

I don't think I get numbness or tingling. In my MVA in 1998, every tooth in my head was cracked or broken. along with the c2 hangman's fracture. Ever since they were all capped, I've had trouble with biting my tongue when I'm eating. Very, Very painful. Sometimes even when I'm just talking. Could this be part of it? I'm going to pay more attention to it. One other thing, I do not recall that I have bit my tongue since they started to treat me for sjogren's

[LizPetillo]

OKAY ... don't take this wrong .. but I'm glad others are getting this.  I can't be the only freak'n person on the planet.  So neuropathy of the tongue CAN be a sjogrens thing?  My brain is foggy today so someone summmize for me.  Is there anything else that can do this other than sjogrens?  I'm looking and can't find things that would fit.  No stroke .. etc. 

Thanks ya'll.  Freak'n strange diseases we have to deal with!!

[LizPetillo]

I can say that I never licked a battery when I was younger. 

When I was describing the buzzzzzzz on the tongue and the lack of ability to control the tongue in general, I said the buzzzzzzz was like licking a battery.  The doctor looked at me like I was from Mars.  I guess I'm the only one who did that when they were a kid.  I only did it once .. and it was just a buzzzzzzzzzz on the tongue like (excuse me for this .. I've never done it) what I'd imagine licking a vibrator would be like.     (okay .. keep the comments clean!!)

[Sha]

Liz~ you crack me up! I have done it! I use my hubby to see if the battery is still good:) now that I know it can really zing ya! I have some taste changes but no numbness yet. My taste changed after I had thrush about a month ago or so.

Okay did a quick search for ya and came up with burning mouth syndrome which they list sjogrens as one of the many possible causes. It can be called scalding mouth syndrome and several other names they list on that link.

http://uconntasteandsmell.uchc.edu/patientcare/burning.html

Here's another one:

http://www.colgate.com/app/Colgate/US/OC/Information/OralHealthBasics/MedCondOralHealth/DryMouth/BurningMouthSyndrome.cvsp

If ya do a search on burning mouth syndrome sjogren's...a lot of other sites pop up:)

Hope that helps put some perspective on it for you guys!

Sha

[MiJoy]

Burning tongue, lips, & inside of cheeks is how my Sjogren's symptoms began in Aug. 09. I've been to 9 different doctors, 8 had no clue what was causing the burning tongue & basically thought I was crazy or hormonal. I finally gave up looking for a solution until a couple of months ago when the burning escalated & a bunch of other symptoms started up. Then I finally found a GP who acknowledged the burning mouth is real. She thinks it's Sjogren's related due to dry mouth, but doesn't want to treat it because she doesn't have experience with salagen & any other dry mouth drugs. She's referred me to a rheumatologist, but still awaiting my first appt. Dec. 22nd.
Mine is on both sides, but worse on the left, most likely because I had Shingles 3 years ago on the left side of my face & inside mouth. It's constant, never goes away, but is better sometimes than others. It has definitely affected my taste.

Sha, those are both great sites that I hadn't seen before. The one from Univ of Connecticut is interesting, about treating for oral thrush even when there aren't visible signs. I've wondered from the start if oral thrush could be involved because I've had sores off & on, but they don't look like the typical oral thrush white sores. I've never heard of the troches they're talking about treating it with.

My question is, what kind of dr. would be knowledgeable in treating it?? I've been to an ENT, an allergist, endocrinologist, dentist, gynecologist, gastroenterologist... none of them suggested this treatment. Which kind of dr. would know what to do - rheumatologist?

[Sha]

Mijoy~ My GP treated my thrush with nyostatin but it has sugar in it so I think that they are suggesting the troche cuz of sjogrens peeps having a tendancy to get a lot of cavities due to our dry mouths...I would suggest a dentist that will listen or talk again with your GP about treating you with troche or nyastatin to give you some relief before your rhuemy appointment;) that way you can tell him/her...yes, this helped or no, we have to look for another cause;)

Hope that helped!

Sha

[flutterfly]

sha~thats funny...i just said ta hubby...uugghh...i feel like i'm suckin' on a penny!

& YES i have tasted a penny & did the battery thingy 2! (no wonder ur hubby don't talk much sha...his tongues been battery~ized!)

the alternative ta the battery was let a boy win or eat a worm!
battery it was! 'til the next day & then i reluctantly took the worm!
(had nightmares it was growin' in me 'til i was 10!but oh well!)  

i ONLY did that 'cause the other dare was hit the teacher on the nuh~uh's!

so i said nuh~uh!

good luck liz! good thoughts comin' atcha!

~*flutterfly that dares kids still ta this day!*~