Jaw: Hi! I recently had an ultrasound of my jaw since... - NRAS

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Jaw

oldatwenty profile image
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Hi!

I recently had an ultrasound of my jaw since my rheumy felt that it was misaligned and i experience slight pain..

interestingly, the results showed that I have slipped discs in both jaws,

they say that its unrelated to RA, but gosh I have a problem trusting doctors after having been messed up too many times.

Just curious if anyone has had a similar experience or insight.

thanks!

noa

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oldatwenty profile image
oldatwenty
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grannyjan profile image
grannyjan

hi oldatwenty

on and off over the years I have trouble with my jaw when I can't clench my teeth together, like you said as if it was misaligned. At one stage the pain was so bad for a longer period of time that I was refereed to an orthodontist, they suggested a splint for night time to stop me clenching my jaw together when I slept. Of course this was going to cost about £70, (good old NHS), anyway I did not go down that route and eventually with rest and pain relief it righted itself. Still get the lighter pain when I can't clench my teeth, usually warns me of a flare!! But never been as bad as that time, so maybe it does just get better on its own. Hope this helps.

GJ x

That is rather scary. I'm afraid I'm very wary of doctors missing and misdiagnosising too nowadays so I fully understand your concern.

I also have a problem with my jaw - seen maxillofacial surgeon and a specialist dentist this week. They both said it isn't arthritis but is two different things entirely. One is called a class two oblatation - a kind of misalignment too as I can't clench. This is that my jaw sticks forward when I talk or eat or sing. It seems to be a bad habit that is minor but is causing muscle swelling and some tenderness - TMJ I think - not arthritis yet but the equivalent of a twisted ankle and not RA related. To me it feels very similar to the way my hands and feet feel re not being able to clench fingers or toes anymore but then I am 52.

Second problem is numbness and pins and needles in my face - especially on left side from mouth up to and around my eye. This is seriously creepy and is getting worse. It got me admitted to hospital with possible stroke a month ago - they decided it wasn't stroke (no CT scan though) but possible Vasculitis. Also same time they overlooked pancreatitis as gallbladder flare when it was actually a drug reaction to Azathioprine.

They are sheepish about this and have it on my notes as an allergic reaction but when pushed the GP can't deny that it can only have been acute pancreatitis. Hard to trust anyone to get things right after that!

So the jaw issue has been going on for about six months and last week GP said it was Trigeminal neuralgia for sure and unrelated to my RA or small fiber neuropathy (part of my RA)

The special dentist did nerve conduction test on my face this week and said it isn't TMJ but is small fiber neuropathy/ parasthesia and has referred back to my neurologist now as he is sure it is unrelated to anything oral and not same as Trigeminal neuropathy.

So GP is wrong again. Special dentist (very experienced) says it could be nerve at back of face - a lesion or a ganglion perhaps. Spoke to my other GP about this today and she thinks I may have Seronegative lupus affecting my nervous system but also RA. Agrees finally that it must all be part of same inflammatory process as I've been telling them it feels all year. Bingo! Proof that sometimes we know best because it's happening to us??!

I don't feel angry because doctors are just fallible of course - but I am sad and disappointed when they don't listen to me just because they are medically trained and I'm not.

Trust your own instincts about your jaw.

Twitchy

Hello,

I have RA in my jaw and it has been damaged it to the point of needing a total replacement, so I feel your pain. My rheum was also slightly dismissive but I've since learned that the jaw is very commonly affected but not often talked about. I've heard that people get fobbed off with TMJ disorder/syndrome which affects the soft tissue and is not on the same level as bone and disc changes.

When they say 'slipped', I assume they mean a dislocation and it might be a massive coincidence (!) but surely, it's far more likely to be RA related? What is your general disease activity like? If you have or have had chronic uncontrolled disease and other joint erosions, I'd imagine that it's all part and parcel of the beast we call RA.

I've just had a look at my MRI report from a few months ago and - amongst other things - it says that my discs are thickened and dislocated, due to the underlying arthritis. So, there we go!

If I were you, I'd ask to be referred to a maxillofacial specialist. If you're in or near London, I can recommend one of the top bods.

oldtimer profile image
oldtimer

Are you sure they said a slipped disc - I didn't think that the jaw had discs? Seems a bit odd to me?

Jeanabelle60 profile image
Jeanabelle60

I have had moderate to severe pain in both side of my jaw for about 3 years now. I did mention it but as someone else said no one seemed too bothered. The I woke up one morning and couldn't open my jaw! I forgot to mention that my filling had all started to fall out as well......anyhow, where was I.....yes lock jaw.....I got an emergency appointment with a Dental surgeon at the local hospital and had x-rays done. When I got into see the doc he showed me the x-rays and all I could see was huge blurrs! He told me that I did indeed have RD on both side with the left side most effected.

He said I would need a jaw replacement in the future but I wasn't 'bad enough' just yet. My filling keep falling out but my jaw hasn't locked again. I have found that since it did lock my moyth opening has reduced a great deal.......bit awkard sometimes when eating. I'm off to see the Doc again for my three monthly check-up on the 9th of July but I don't expect any change as I have been doing fairly well recently with regard to pain and distortion......all the best.

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