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  • Sjogren's Syndrome

    Does anyone know what this is? I saw it on one of our sites under dry mouth and wondered what it means? Didn't find it under "search"..thanks, sanctuary
    Never take a "No" from someone not qualified to give you a yes..

  • #2
    It's a medical condition that makes your eyes and mouth very dry. It's a specific medical diagnosis and if you suspect you have it you should be talking with your physician.

    Some medications can cause dryness, but that's not Sjogren's --- you can find information in the Patient Handbook at http://www.ic-network.com/handbook/sjogrens.html

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Donna, Thanks, I looked up the site. It sounds exactly what's been going on with me, right down to the numbness, especially the eye dryness etc..when the MRI and CAT scan showed nothing else I thought it was going to be another, "it's all in your mind" thing... I'll ask my doc about this, thanks again, you're a wealth of info. sanctuary
      Never take a "No" from someone not qualified to give you a yes..

      Comment


      • #4
        Hi, I have sjogrens, am very sorry to hear that you do too. I guess you already know that you need to take very, very good care of your teeth with this condition right? Mine are just falling apart since this problem started. Already have bridges & some fake teeth & I am only 31. You may want to ask your dentist about flouride treatments. I started them about a year ago & have not had any cavities since.
        Good luck!

        Comment


        • #5
          I'm sure I've had it for years, but no docs have caught it, and I wasn't even tested til recently, and the blood work was negative. so, i suppose the lip biopsy is the next thing.
          and really take care with your teeth. I'm 36 and I ended up having mine pulled 2 years ago, since my fillings had fillings, lol. Really though, no matter how much care I took, I would have a bunch of new cavities everytime I went to the dentist. Finally, the dentist suggested pulling and dentures. I've never regretted it! It's nice to be able to eat what I can with everything going on in my body, and NOT have to worry how my teeth will react!
          Also, Biotene products are really good for the dry mouth. I use the mouthwash and it heals the rawness in my mouth.

          Comment


          • #6
            I've definately got the dry eyes and some days I'm sure that the dry mouth will drive me NUTZ eek I've always kept up on dental work and have 9 crowns in my mouth and still,pain all the time. They are sensitive to hot, cold and even the cold outside. When I go for a cleaning I have to have my gums numbed it hurts so bad, anyone else? Please don't tell me I have another problems to content with. I had ALWAYS got something with me to drink 24/7........
            teri
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

            Comment


            • #7
              Hi Teri,
              I, too am picky about my teeth. I have lots of crowns in the top and bottom, and have never had the problem you are having. What does the dentist say that would cause all that pain, when you get them cleaned?? Has anyone had a crown made the new way...with a computer!!! Just had my back tooth on the bottom done with a crown..what a breeze. He just put a small looking thing in my mouth,(like a computer mouse) took a picture and it was done the same day. Pretty cool..ugh??
              Susan
              Susan
              People may not remember exactly what "you did, or what you said, but- they will always remember how you made them feel"

              Comment


              • #8
                WOW! Thanks Susan! I've got a tooth that had the root canal done years ago in and it's finally ready to break, now I don't have to be so afraid. The only reason I've ever been given for all the problems is SEVERE TMJ and I just do not have the fight left in me to do battle with my insurance company to get the surgery covered......I've had many different mouth guards to sleep in and when I literally bit thru the last one I said screw it.....at a grand a pop, it just isn't worth it anymore~
                teri
                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

                Comment


                • #9
                  HI Teri,
                  I had the TMJ surgery done in 1973. I'm sure things are alot better now. Blue Cross paid for mine back then so if your oral surgeon works with you, your ins., should pay for it. I know what you mean by dealing with ins.,!!! I had rather take a BEATING than deal with them!! I HATE IT!!!
                  HUGS
                  SUSAN
                  Susan
                  People may not remember exactly what "you did, or what you said, but- they will always remember how you made them feel"

                  Comment


                  • #10
                    I had to appeal insurance denial to have my TMJ surgery covered, but with the help of my oral surgeon, we did get the insurance to pay.

                    I had to contact the office of a previous dentist, who has since moved out of state and they were very helpful, plus I had a history of TMJ treatment for a period of something like 12 years. That, along with the radiologist report, convinced the insurance company.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Hi, I have a lot of symptoms of this syndrome, but I'm not sure if it's an overlap from IC or from medications? Ok, first of all I'm on 50mg of Elavil, but I don't take it every night, and 300 mg. of Elmiron. I just sit here and my eyes dry up, my mouth is always dry and it's got a whitish film over my tongue, my teeth are sensitive and in pain, and my nose has this burning sensation like it's really dry. I'm constantly using nasal spray and eye drops, and brushing my tongue to get the film gone, but nothing is working. Is this Sjorgen's? Any input would be greatly appreciated, thanks! grouphug
                      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                      Comment


                      • #12
                        I forgot to add my eye sensitivity. I can't be around smoke, and in daylight, like sunlight, my eyes burn and water, and I can't drive at night because the headlights blind me.
                        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                        Comment


                        • #13
                          Just want to share, Sjogren's is also related to underactive thyroid, Hypothyroid disease.

                          Hypothyroidism can cause lack of tears (dry eyes)
                          and a lack of saliva because it causes autonomic nerve damage.

                          With the correct thyroid medications the tears and saliva are increased and the condition improves greatly.

                          See the July Redbook to read articles about thyroid disease and also an article about IC. Im so glad they are close together because they are so related. Also July Prevention has a "Thyroid Alert" article.

                          I now take 3 1/2 grains of Armour thyroid and I now have tears and lots of saliva. Be sure to check with your Dr. about this. Also there are good thyroid websites to learn about symptoms of underactive thyroid.

                          Try these sites www.thyroid.about.com and www.thyroidtears.co.uk

                          My new motto is: "You can take away my Armour thyroid...when you pry it from my cold, dead hand!
                          cussing

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