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Post by Sharona on Jun 16, 2009 16:17:34 GMT -5
Stopping by to say hello and was wondering how many here have heard of Dry Mouth or Burning Mouth Syndrome? I learned very much since I am experiencing both and it is severe. I have never dreamed something like this could even exist. My dry mouth is from the Sjogren's and I was put on medication helps so much. Now as for the Burning Mouth Syndrome medical doctors don't have answers or cure or most don't know what the heck it is. So wondering if anyone here gets the burning mounth and tongue and gums. It makes Dentures so hard to wear. :' Those numbers I have to verify are so irritating. ( Thanks all! Hugs, Sharon
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Post by Cubby on Jun 16, 2009 16:55:46 GMT -5
I do not have either thing. HOWEVER, I am very hyper-sensitive to anything even the least bit spicy. I never really connected the dots that it was due to the scleroderma. However, after all these years, I still learn new things about this disease. ---just when I thought I was so smart.
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Post by Sharona on Jun 16, 2009 17:44:15 GMT -5
Thanks for responding and the Burning Mouth isn't connected to Sclero as far as I know. Now the Sjogren's is connected that is what the S stands for in Crest Scleroderma. Have a good evening Cubby. Hugs, Sharon
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Post by joannern on Jun 16, 2009 20:28:54 GMT -5
I have both, in my case the burning was diagnosed as lichen planus, yet another autoimmune problem. It calms down and flares up but you never know when.What do you take for the dry mouth?
Joanne
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Post by sharona on Jun 17, 2009 14:57:42 GMT -5
Joanne so you actually have this problem? I can't seem to find anyone who does. My tongue will burn so severe like scaled water is being poured on it and my palate (all the time). The pills for the dry dry mouth are Evoxac the Ent gave it to me my uvula was stuck to the palate of my mouth. The only thing that helps is eatting or something cold weird huh and my xanax. I also wear dentures so this is getting hard to do. How long does yours usally last? Hugs, Sharon
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Post by joannern on Jun 17, 2009 17:22:03 GMT -5
It has lasted for at least a month at a time. The worst flare up lasted longer. Any type of spicy food or acidic food still sets it off but it has not lasted thank goodness. It is very uncomfortable. My dentist first said the membranes in my mouth looked strange and then an oral surgeon confirmed it. He says there is little that can be done. I have almost partial on top and it this condition did make wearing that harder.
I hope you get some relief. I will ask the doc about the drymouth med.
Joanne
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Post by sharona on Jun 17, 2009 20:07:26 GMT -5
The medication took the dry mouth away but this burning of the palate and tongue I can't take much longer. What does your tongue look like with that illness? Mine is just very cracked and coating on it. My Ent saw it when it wasn't to bad and said its from a dry mouth. I don't know what more to do and doctors surely aren't knowing. I have had this for about 2 weeks now and today was the worse just cried all day. My husband was going to take me to the er but what would they do nothing. My throat also burns so I'm totally stumped on this one. Like I said tho my mouth went dry for so long before this happened that I wonder if it is just needing to repair itsself. Thanks again! Hugs, Sharon
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Post by Cubby on Jun 17, 2009 20:48:18 GMT -5
SHARON: I sure wish I had an answer for you. Is there any chance at all that it is THRUSH which is a yeast infection??? I never had the thrush in the mouth, but I did have a yeast problem in my esosphagus. They gave me DIFLUCAN for it. That was about 3 years ago. Last October, I developed an ulcer in my esophagus. That burned something awful everytime I swallowed. I got a prescription to drink something for that.
I realize your docs probably went all over this, just wondering as it breaks my heart that you burned so much you cried all day. I remember being there and it is awful!!!!
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Post by sharona on Jun 21, 2009 20:37:40 GMT -5
Thanks Cubby and it seems the doctors don't really know much of anything. My Ent is out of town so went to the Dentist and he prescribed a mouthwash and in two weeks if not gone he will send me to a Pathologist. I have cried many days with this burning in my mouth it is horrible. It isn't Lichen or whatever the Dentist said no and nothing is appearing on my body. I did have Thrush and Difulcan was prescribed and my coumadin shot up to 10.1 that is a death sentence. I was kept in the hospital for a week it was severely serious they said. I could have hemorraged at anytime infact thanks to God I made it o.k. Cubby I have a group to on Proboards it is Living With Scleroderma come join in if you can.
livingwscleroderma.proboards.com/index.cgi?board=general
Hugs, Sharon
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Post by steve201 on Jun 25, 2009 11:26:20 GMT -5
I once knew a girl with "hot lips".. ....is that the same??.. ;D ;D just kidding.... Steve
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Post by ndpblake on Jul 3, 2009 17:01:02 GMT -5
Steve 201, You are really funny! I wish I could help Sharon, but at a loss. I have burning mouth sometimes, but it goes away. Hot, spicy, food for the young types, does it for me, but I think Sharon needs more help than to stop eating spicy foods. All the cooking channels show the cooks putting hot stuff in all their recipes; every restaurant puts in hot stuff (to give it a "kick" as Emeril would say), so I think that is what does it for me. Where are the dentists; the ENTs who should have a solution?
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Post by Cubby on Jul 4, 2009 17:07:57 GMT -5
SHARONA: I signed up, waiting for administrative approval to get on the board.
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Post by grammie on Jul 19, 2009 14:48:04 GMT -5
The chemo drug I am taking has giving me a very sore month. I was told to mouth wash with 1 tsp salt to 8 oz of water four times a day. That has helped but it was still sore and a bland diet is for the birds as far as I'm concerned.
I was told about "magic mouth wash" . It is equal parts Lidocane, Maalox, and Benadrile. I make a mixture of 5 cc of it and rinse away about a half hour before eating. It sure has helped! I believe the Lidocane is only by PX. Anyway, I pass this along for whatever it is worth.
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Peggy
New Member
Posts: 33
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Post by Peggy on Jul 22, 2009 18:28:50 GMT -5
I too use the Magic Mouthwash daily and it's helped alot, along with the evoxac (sp?). I chew gum (sugarless) constantly, even during the night while I'm sleeping. My eyes are getting drier and I may have to start using drops. This has just started to happen so will approach it at my next apt.
Hugs, Peggy
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Post by sharon on Aug 1, 2009 15:26:38 GMT -5
Thanks all my mouth is still burning tongue and gums. My Dentist is referring me to an Oral Surgeon. I am a nervous mess is my breathing can't tell if it is my COPD or Panic Attacks. I had a CT on my lungs and it shows a 1 centameter mass and the report read suspicious for cancer. Well just what I needed to hear and now I am having panic attacks so bad I can't even breath. Why would God make me suffer so bad and can't it ever get better?
I listened to the Country song posted and I broken down and cried. The part about the hands really did hit home the song is fantastic thanks for sharing that.
I see the Pulmonary Doctor Thursday to get my death sentence on the lump and get baddered for ever smoking which I quit 5 years ago but for what this. Everyone I am so down and mentally drained that I don't know how much more I can take. I wish God would hear my prayers.
Hugs, Sharon
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