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Beginning of sclero mouth?


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#1 doodlehead

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Posted 29 May 2009 - 05:22 AM

I was wondering if there are any subtle signs of the beginning of sclero mouth (other than the dentist saying please open your mouth wider even though they can see that your lips are pretty small and tight).

I have a line on the bottom part of my bottom lip, it looks like a perfectly drawn scar. I have just noticed small white bumps under the skin on upper and lower lips (they are very small I have to stretch my lips to see them and they are under the skin). Because of sicca syndrome I inspect my teeth and gums pretty regularly and have never noticed them before.

Some days I think I'm beginning to see things that I just haven't noticed before or they were there and I just didn't pay any attention. Goodness, am I turning into a hypochondriac? :unsure:

#2 Shelley Ensz

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Posted 29 May 2009 - 07:41 AM

Hi doodlehead,

Please keep in mind that I have no medical training at all and verify everything I say with a reliable medical source. As I understand it, small white bumps are not considered to be caused by any form of scleroderma. Usually they are just oil glands which can become more noticeable as we age. Occasionally they can be due to sexually transmitted diseases (STDs) so it is a good idea to have them evaluated by a primary care doctor or a dermatologist; and there can easily be many other causes that I'm not aware of.

And to reassure you, it's not being a hypochondriac to notice any abnormality in our bodies. It's not being hypochondriac even to be nervous about such a thing or to ask questions or see a doctor to find out what it is. It's a very normal thing to question all sorts of abnormalities after we've been diagnosed with scleroderma, as we tend to be on hyper-alert to try to nip new symptoms in the bud. But hyper-alertness is hard on stress levels so most of us share our odd questions here, like you just did, to get ourselves calmed down asap and back on an even keel again.

I didn't notice my mouth getting smaller (microstomia), but it was pointed out to me by my dentist after I had a series of tooth losses. My dentist looked up scleroderma in a medical textbook and told me that my mouth was a classic textbook case of scleroderma (in addition to Sjogren's). They are able to compare xrays and measurements, as well as note patterns of bone resorption and ligament loosening, things like that which happen so gradually that we are very likely to not notice them at all.

Now my dentist has to use child-size tooth rests, impression plates and such to work in my mouth. I can look back in our family album and see the changes. But I can also use a lip pencil to draw outside the lines and create an illusion of larger lips, so other than thousands and thousands of dollars of dental work, it is actually a very slight issue, compared to other things.
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.

#3 Kathy D

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Posted 29 May 2009 - 11:46 AM

Hey doodlehead,

I am noticing changes too. Dentist told me to do mouth opening excercises. I have two flat patches under my nostrils. A few years ago I noticed them but they are slowly growing.

KD
Diffuse Scleroderma Diagnosed March 2009

#4 summer

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Posted 30 May 2009 - 01:50 PM

Hi Doodlehead,

I also have the typical Sclero mouth, during the early diagnosis stage, I walked in to see my Rheumatologist the very first time, and she said, you have the typical Sclero mouth. Maybe a few months after diagnosis, I developed ridges under my bottom lip, of course only I could notice them. They haven't developed any further in the last 2 years :rolleyes: .

Summer