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Biomarker for Diffuse Scleroderma skin has been discovered!


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Mouth Shrinkage


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#1 mando621

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Posted 16 September 2010 - 10:35 AM

Hi folks.

Well, I was looking through my calendar and found a note at the back, it just said "mouth 12/06/09 6cm" so I was curious. How did I measure?? Well, I tried measuring across my mouth in a relaxed state, and that wasn't 6cm, so I tried opening my mouth and measuring the distance from the inside of the lips. Well that wasn't 6cm either. I found it was 5cm both ways. So, is it possible that my mouth shrunk a centimeter in 9 months? I'm seeing a new rheumatologist tomorrow and I thought I should bring this up.

I can tell that the corners of my mouth are very tight when I try to open "wide". The wrinkles are getting more pronounced around my upper lip as well, I didn't think I would have measured this much change though.

Well, just wondering...

I'll let you know what the new doctor thinks.

I also am going to be working with my University Speech pathology department in regard to my swallowing and speaking troubles. I'll let you know how that goes. At least if I'm under the care of graduate students supervised by faculty, I don't think I have to pay for the services.

Mando.

#2 Jeannie McClelland

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Posted 16 September 2010 - 03:26 PM

Hi Mando, I didn't measure my mouth, but I have a pretty good idea of how much it has shrunk from photos. My upper lip wrinkles are pretty pronounced, my lips are disappearing, and I keep getting "Open wide. Really wide... wider..." from various people who want to look inside my mouth. Hmmm, I'd say a centimeter might not be out of the realms of possibility. I keep telling myself it gives me better pucker power for playing the whistles. :rolleyes:

I wonder if your grad students couldn't prescribe some good facial exercises to stretch your mouth?

Warm hugs,
Jeannie McClelland
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#3 miocean

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Posted 16 September 2010 - 04:04 PM

My scleroderma specialist measures my mouth every visit. She says it is back to normal when I open it, but I know my dentist has a hard time with me still. I can't eat a big sandwich, usually in a restaurant I order it without the bread or roll because my mouth won't open wide enough. I have vertical lines all around my mouth, top and bottom.They are REALLY noticeable from certain angles. It's such an obvious sign of scleroderma but I try not to let it bother me.

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#4 enjoytheride

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Posted 16 September 2010 - 04:08 PM

Could it be the space between the upper and lower teeth when you have opened it as wide as possible?

#5 Sweet

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Posted 17 September 2010 - 03:46 AM

I think it could be a possibility. My changes seem to go in spurts. Nothing for awhile, and then all of a sudden a lot happens. I haven't thought to measure, but I've documented with pictures, and it's always a little depressing to see the changes in just several months. Not sure why I document this kind of thing, I guess for my own morbid curiosity. I had my teeth cleaned yesterday, and I'm so sore, it was the most difficult cleaning I've had yet.

Hang in there. :flowers:
Warm and gentle hugs,

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#6 Amanda Thorpe

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Posted 18 September 2010 - 09:20 AM

Hello Mando

I wouldn't put anything past sclero, if I woke up tomorrow with no lips at all I'd be like...oh well!! My lips very quickly got smaller and smaller but thankfully the shrinking has stopped. It just seemed to suddenly start then stop. The lip pencil is now my best friend!

Take care.
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#7 mando621

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Posted 18 September 2010 - 11:38 AM

Hi everyone,

Thanks for your replies.

I went to my appointment with the new rheumatologist, and it was quite a disappointment. She wasn't thrilled that I was hopping to her since I see the other rheumatologist in the practice. She listened, but mostly with a half ear. When I brought up some issues I'm dealing with, such as the mough shrinkage, joint pain, extreme pain in eyes, she more or less said that while we may not know if it is definitely scleroderma at this point, that it wouldn't matter anyway since there isn't much to do for any of those things. She said we should check for internal organ involvement again, so I have to re-schedule PFT and echo. I gave some times I would be available, but the appointments are for when I am unable to go. So, I have to reschedule them.

I really was angry when I left. She more or less said that I could pursue seeing the scleroderma specialist in Madison if is worth it to me to pay out of pocket. She wasn't going to refer me. I've decided that I'll be changing insurance which will hopefully open up the specialist there without getting a referral. The plan I am considering would include all the doctors I currently see, but also those that I would like to see in Madison. That could be the best thing.

She really dismissed the issues with scleroderma that aren't internal as minor and un-treatable. More or less, I was told by an internal medicine doctor to see the rheumatologist about my joint pain. She ended up not even talking to me about my finger and toe pain. She told me to see the eye doctor and other doctors for the issues with my mouth. The only good thing, they drew about 6 vials of blood for some blood tests that haven't been tried yet.

So, I will wait to see what the speech pathologist has to say if I can get in to see her.

Mando.

#8 Snowbird

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Posted 19 September 2010 - 12:39 AM

Hi Mando

I'm sorry to hear that appointment was such a disappointment and from what you tell us, I can certainly understand why. I would find it very difficult if it were me, to stick with her as well.

I think it is a good thing that you are going to pursue another avenue to get to a better specialist. :emoticons-yes: There will be one out there waiting for you, you just have to find that special one and you will!

Follow your heart, I believe it is leading you in the right direction to do just that. :fairy:
Sending good wishes your way!

#9 enjoytheride

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Posted 19 September 2010 - 04:17 AM

Hi Mando- I did what you mentioned re: insurance. It has been much more expensive but it was good not to have to have a referral to see another doctor. If you have a doctor who doesn't want to cooperate, you are really stuck without this freedom. I know so many people don't have the ability to change insurances and am very grateful I can.
But even if you need a referral, can you get a second opinion under your insurance? Many insurances do have this option- you might not be able to get multiple visits approved but maybe be able to get some questions answered.
Also, you might want to check with the speicalists in Madison that you want to see as they may require a referral even if insurance is not a problem. This was true for the endrocinologists at UCSF that I saw. But the referral was from my primary doctor. not the rhuematologist.
Anyway- good luck with it all- I had some of the problems you mention and did get help with them.

#10 maddy08

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Posted 22 September 2010 - 07:51 AM

I have not been to the dentist since I got ill. I am just too scared. Now I must go. Can any dentist deal with it. I was never big on going to the dentist so I have no regular dentist. Must I tell the receptionist when I make the appointment that I have scleroderma to warn the dentist? Would he even know what scleroderma is? My mouth is very small and tight. I can't eat a big sandwich or burgers, etc. Must say I am quite a messy eater at the moment.

#11 mando621

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Posted 22 September 2010 - 12:49 PM

Hi Maddy,

I do tell my dentist what is going on. They have been very accommodating in helping me. They use a brace when I need to keep my mouth open for a long time so I can rest my jaw, and we take frequent breaks when they can. I can give them a high sign that I have to close my mouth, and if they can, they let me rest a moment before continuing. I also use a prescription toothpaste.

If things keep going the way they are, I would guess that they will have to use some of what they use on children in my mouth. At least the xray forms are softer now and don't feel like they are cutting into the roof of my mouth.

The rheumatologist I just saw mentioned I should be seeing the eye doctor and dentist 3 times a year. I haven't had someone suggest that yet, and I don't know what I'd have to do to get insurance to cover that. My dental plan only covers 2 cleanings a year.

One thing that the dentist did last time was to look up what kind of effect scleroderma has on the mouth. She said we should really watch my roots and gingival area since the connective tissue there can be affected and cause loosening teeth. I am getting slightly larger pockets around my teeth and I take excellent care of my teeth and gums. This is unusual for me, so I think it is sclero related.

Best wishes at the dentist. I think I'd rather go often and address problems a little at a time rather than deal with a big issue after delaying visiting the dentist.

Take care.