I was diagnosed with IC 2 1/2 years ago and have done well with elmiron but for the last 14 months I have been dealing with a very sore, painful tongue. I have seen every doctor possible and no one can come up with anything conclusive and I keep suffering. An ANA and Fana panel blood test shows some autoimmune problem and because my mouth gets so dry also they are thinking it might be sjogrens. I had the Schirmer test and did not tear much at all. The lip biopsy didn't show abot of problems with dryness. My problem is a moutn full of muscus or saliva, a white sore scaly tongue, burning and pain. I had some thrush in the beginning but have not had a positive smear since last fall. Sometimes my bladder will flare when my tongue is so sore. Does anyone have any suggestions on treatments or what I might possibly be dealing with? I really need help. Mentally I'm losing it. Linda Lou
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I have a tendency to think of allergies whenever someone has sores that won't heal. Has this been considered in your case? I know there is only one kind of toothpaste I can use and I have to be extremely careful about any mouthwash at all. Also some foods will cause sores in my mouth.
I just hope you'll be able to find the cause soon --- I know it can be very frustrating.
Sending healing thoughts,
DonnaStay safe
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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]
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Thanks, Donna, for responding to my message. I know you had some tongue problems awhile back (chronic glossitis, etc.) What was your final outcome and did it go away? What toothpaste are you using? I am using the Biotene products and it doesn't hurt but doesn't help alot. I have sores at times and then they go away but the pain and white furred tongue is always there. Always worse after I eat. I have some mild allergies (mold, dust, pollen, etc.) but nothing that I thought was really serious. I don't know. After 14 months I'm pretty bummed out and don't know what doctor to try next. Those of you who also have sjogrens syndrome besides IC, have you had any of these kinds of mouth and tongue problems? Thanks for listening to me. Linda Lou
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