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Dentists knowledgeable with sclero


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#1 TJ903

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Posted 15 December 2008 - 02:29 AM

Does anyone know of a good dentist in Florida? My oral surgeon dropped my when he found that I had sclero. There are days when the TMJ pain far outweighs the sclero pain, if you can imagine it. My mouth obviously will not permit a lot of activity to go on, and I'll probably have to hit the gas for my annual cleaning.

Any information will help. I did find toothpaste and mouth rinse that do wonders for the dryness. Of course, nothing lasts forever, but every little bit helps.

Thank you for you insights, as always- they are precious little diamonds of hope!!!!

Tj903

#2 Sheryl

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Posted 15 December 2008 - 03:48 AM

TJ903, my family dentist made a mouth guard for me right away. I kept it on daily a hour here and there when I was at my computer and not needing to converse. I slept with it on every night for almost two years. Now, I wear it only once or twice weekly to make sure my teeth stay in alignment. The dentist thought if he could keep my teeth protected with the guard then maybe if they tried to move or shift they would have a harder time doing so. My lips and jaw are the only facial occurrence I have to deal with, so far. I also have TMJ, and for the first year or so I couldn't believe the pain it could cause. I did have to have a bunch of dental work because things were happening in my face. I had several root canals and caps because of the nerves being damaged and touching each other and causing severe pain. Maybe a mouth guard of some sort will possibly help you out. If you call your insurance company they should be able to recommend a good oral surgeon. Or someone whose specialty may be for special needs patients. I was lucky that my dentist and his brothers do all the dental work in one office. Each one has their own specialty, besides regular dentistry. My dentist happens to have about 4 scleroderma patients. So he knew, what he wanted to do for me before I did. I hope you find something that helps with the pain. Has your doctor prescribed neurontin to help with the nerve pain? Are you taking anything at this time? Start making phone calls. There are dentists out there that aren't afraid of CATCHING scleroderma. Hah!
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#3 smac0719

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Posted 15 December 2008 - 10:59 AM

Hi TJ. I too had or have TMJ. I have not had any problems with pain in years (as I knock on wood). There was a time that my jaws locked and popped daily. It also got to the point that my jaw would got out of alignment and stay like that for days. The pain was bad. My TMJ doctor made a splint for me that I wore at night. Until I got used to it my floor would wear it because I'd take it out and toss it in my sleep. It was always a guessing game as to where I'd find it the next morning. :lol: I also did physical therapy for the TMJ. I thought they were kidding, but I think that's what actually did the trick for me.

I live in Florida, but on the West Coast so unfortunately I don't have anyone I can recommend. I know some folks in Orlando I can ask if that's not too far of a drive for you. Shoot me a PM if you'd like for me to inquire.
I may have Scleroderma, but Scleroderma doesn't have me!

#4 TJ903

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Posted 16 December 2008 - 07:12 AM

Thanks for the quick response, the fact that you are familiar with the pain from TMJ makes me feel better, sorry that you have itm, but you can understand what I am going through. I had a couple of splints made, had a GELB appliance, and blateral arthroscopic procedures done. My mouth is so small that the child size mold will not fit in my mouth and I have boney growth on the roof of my mouth and behind my teeth on the bottom so making splints are difficult.

My dentist has informed me that the orthodontist has truly wrecked my bite and he doesn't know what to do. But by all means, please PM me and give me the name of the doctor in Orlando!! It's just a short drive for my husband and if he can help -the travel time doesn't matter.

My problem with my jaw other than having it repaired incorrectly after I broke it in a car accident is that the miniscus sits anterior to the condile on both sides, thus I have no cushioning or very little. I'm already on a couple of pain killers and don't know how Neurotin would help, but I will sure as my pain management doctor.

Maybe, they can do a mouth piece for me, It's just really painful for them to do it. Thanks again for the help and the doctor's name.

---TJ

#5 smac0719

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Posted 16 December 2008 - 02:35 PM

Ok. I'll send an email out tomorrow and get some recommendations. I'll send you a PM with the information.
I may have Scleroderma, but Scleroderma doesn't have me!