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Could this be a parotid problem?


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#1 betty32506

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Posted 19 April 2009 - 06:56 AM

This is weird. The rheumatologist told me the sores on the under sides of my lips are Sjogren's. I thought Sjogren's takes more than that to diagnose. And even more since she has been very slow to put labels on anything. In addition to the sores I frequently bite my tongue. This happens when I am eating, talking or just doing nothing. The weird part is that some times it is as if I bite the very root of the tongue, something not possible to do. The intense pain shoots from the root of my tongue into the ear. Looking at a diagram of the parotid gland that is the area that hurts so much. Sometimes it will continue to hurt for hours, though not the intense pain it starts with. I read that the parotid gland is the largest salivary gland. That brings up the Sjogren's question. Has anyone run across this and any ideas that might help me?
Thanks for listening.
Betty

#2 betty32506

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Posted 19 April 2009 - 04:38 PM

Thanks for your response. I had wondered if it could be a blockage as it is always just on the right. I don't know what if anything I can do about it. I tested positive for sclero but as far as I can tell I don't have any symptoms that I relate to Sclero. I also wonder if it is two separate problems. The tongue biting is that I don't have proper control over it. Could that be neuropathy? I have just about concluded that neuropathy can be anywhere.
That is sad about your brother separating himself. Sometimes you just have to let it be. I do hope you hear from him again.
Betty

#3 Jeannie McClelland

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Posted 20 April 2009 - 03:32 AM

Hi Betty,

That sounds really miserable! Your rheumatologist may be so familiar with Sjogren's that she felt confident in making the diagnosis without further tests.

We've got a great page on Sjogren's, which includes a list of the tests commonly used to diagnose it, symptoms, treatments, and so on.

What has your doctor suggested about treatment?

Tongue biting - well, I do this all the time, but in my case there is a strong association with my husband putting away the dishes from the dishwasher. :lol: All joking aside, I go through spells of biting my tongue. It seems that I do it more when I have a sore mouth and once I've done it, just being careful not to do it again causes me to do exactly that. Did your rheumatologist say anything about it? If it were me, I think I'd ask my dentist.

I hope you get some relief soon.
Jeannie McClelland
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#4 Shelley Ensz

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Posted 20 April 2009 - 06:17 AM

Hi Betty,

I've had Sjogren's for decades, with some severe problems with my right parotid gland causing several hospitalizations, and I also get frequent mouth sores. But I've never experienced a problem with biting my tongue or the very back of my tongue. Rather, for me, the parotid pain is confined to the parotid gland much like the mumps but radiating from there usually with pain, swelling and redness in the jawline underneath the ear. The pain often radiates into the ear and can feel similar to TMJ.

You might want to clarify things with your rheumatologist at your next visit. Also check with your dentist to see what ideas they might have for possible causes of tongue biting. I do know that once I bite the side of my cheek accidentally then it swells up and makes the area even more prone to injury so maybe you are encountering that?

I hope you find some relief from it soon or at least some answers.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 betty32506

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Posted 20 April 2009 - 10:40 AM

Jeannie and Shelley,

Thanks. In my post I abbreviated the matter zooming in on the parotid gland. That gland is quiet large and looking at a picture what I feel is the entire area. The pain shoots from just under my chin and out into my ear. There are no visual ques.

I have always had good dental health and seldom saw a dentist. My 40 year old fillings were worn down to a hole. I had about $10,000 in dental work. After that I was biting my jaw and it formed a callous. The dentist filled the cap that was possibly a problem. It didn't make any difference.

Then I got blisters on the under side of my lips. Sort of like fever blisters that never came to a head. My whole mouth became so sensitive it became a big problem. A bite of pizza that had touched pepperoni would about set my mouth on fire. The difference in my problem and the burning mouth syndrome was mine was triggered by something. I can not do proper dental care as toothpaste and such burn so bad I couldn't use it. For a while I used baking soda. Then I found a kids toothpaste bubblegum flavor and after brushing my teeth it didn't feel clean, just bubblegum taste. Thankfully a few days ago I found another kids toothpaste that is working well.

My dentist was step 1 in trying to handle this. I thought he should know about sores but he didn't. He did know about burning mouth syndrome. He said he would look into it and a few days later he did call but said he had nothing further.

Back to the rhuematologist. She said Sjogren's and prescribed Evoxac which is supposed to help with the moisture. If it helps I can't see it.

All that was before I started having what I thought could be a parotid problem. I have not seen the dentist or rheumatologist since then so have not checked it out further. It seems reasonable that it could be connected to the Sjogren's. My next dental trip will be to a different dentist.

Betty

#6 Shelley Ensz

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Posted 20 April 2009 - 03:43 PM

Hi Betty,

It just never works when we try to simplify things, does it? :blink:

You might want to add an ENT (ears, nose throat) to the mix. No specialty "owns" the parotid gland so it can be endlessly confusing tossed between them. But ENT is about as close as you can get to the specialist that would be most likely to help, at least from my personal experience.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 MaryFanPhilly

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Posted 24 April 2009 - 08:18 AM

Hi Betty,
Parotid problems are usually treated by an ENT specialist. I too had swollen parotid glands, particularly on the right, and it was determined to be related to sicca, or dry mouth. I have no Sjogrens antibodies but problems with dryness anyhow. The swelling went from just in front of my ear to down below the jaw line into my neck.
The final diagnosis was sialadenitis, which means- swelling in the salivary gland. Huh.
Unless there is a blockage, there really isn't any treatment except to promote saliva production through good hydration and sucking lemon drops! Or even putting a drop of lemon juice under your tongue.
My ENT did order an MRI to be on the safe side anyhow so you should be checked for your own peace of mind. Incidentally, when the MRI was done, they found abnormalities in my thyroid so I'm having a biopsy for that next week.
Everything is attached to everything else, isn't it?
Good luck and keep us posted!
Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#8 betty32506

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Posted 24 April 2009 - 02:39 PM

I had an ENT that was really good. He is no longer available here. I have been considering another one, but don't know about finding another one. I have no visual signs and feeling that area doesn't show me anything either.