Burning itching mouth..... couldn't find other posts again... need help!

[icnTerri]

Hi!
I'm looking for the couple of other ladies that are having these mouth symptoms too.

I went back to my dentist today, and after watching it for the last 9 months they want me to go to an oral surgeon and have a biopsy done.

This is so horribly maddening! I need something to make it stop itching!! Between the itching and pain, I'm a real nut-job! I just know I can't take this much longer.

Annnnnnnnny ideas? I searched all over the internet, and couldn't come up with anything other than allergies-which it's not.

Big sigh.

[cmn]

I have a bodily itch when in a flare,though never in the mouth,good luck

[pikamom]

I don't have that, the burning or itching, but my mouth is extrememly dry, so dry my lips stick to my teeth when I talk and I've taken to bringing a drink with me everywhere I go. My tongue is brown. I think it's partly lupus and combined with meds, especially the ditropan. Could it be a reaction to meds? My dad once suffered horribly with a sore tongue and went to doctors for quite awhile finally was told it was stress/psychological. But he also has lupus, although not the kind I have, his is limited to his skin.

------------------
What we have is Today.

Stalked by the Wolf
http://www.geocities.com/pikamom1/index.html

[Julie B]

I do not have this Terri, sorry that it is so aggravating...I have a friend who has geographic tongue...pain when she eats spicy or minty things...

I sure hope you dind out soon what this is!

------------------
Hugs, Julie B

jabrd777@aol.com

[Julie B]

I do not have this Terri, sorry that it is so aggravating...I have a friend who has geographic tongue...pain when she eats spicy or minty things...

I sure hope you dind out soon what this is!

------------------
Hugs, Julie B

jabrd777@aol.com

[yvette]

(((((((Terri))))))))))
Do you have any "blisters" or "canker sores" or anything like tht in your mouth or around or your mouth. The only thing I could think of is maybe its a form of Hand, Foot, and Mouth Syndrome. Its not that mad cow diease thing.

My friend's Daughter had it. It usually strikes young children because their immune systems aren't as strong as adults. It can be found in daycare systems. But I was thinking maybe with iC our immune systems arent working so great. THe syndrome is contagious, and its uncomfortable--itchiness, hotness, etc.

Terri, i am so sorry you feel this way...I hope the doctor can find an answer for you soon!
hugs,
y. http://www.ic-network.com/ubb/smile.gif

[icnTerri]

Oh thank you guys for responding and caring. I Sure Do Need Some Of That In My Life Right Now. http://www.ic-network.com/ubb/frown.gif I feel so freaking alone, I can't imagine my life if I didn't have all you wonderful people in it. Thank you, Thank you, and Thank you again.

OK, I don't have any blisters or sores, here's some more detail: The whole roof is itchy, my tounge is itchy and burny, when I eat or drink anything it burns and stings the tongue and roof, it's hard to swallow cuz the left side feels funny down my throat a bit... At the front of the roof of my mouth by my teeth, the dentist asked if it was itchy cuz it's lumpy, the middle of the roof of my mouth is still flat and has a red spot that's speckled with white-where it's always being itched with my tongue, and where my tongue can reach the back of the roof of my mouth it feels rough and tastes a little like when you put your tongue on a battery. My tongue is mostly numb in the middle. I can feel and taste on the outer edges of my tongue only. The roughness of my tongue has been rubbed off in the middle and I can see lumps in the middle of my tongue if I flatten it a bit. My throat is still always sore, 6 1/2 years now, even after tonsillectomy 2 years ago, at which point they also removed a swollen lymph node that they said was infected. When they removed it, one remaining "blew up" like a golf ball on my neck. Now the same removed lymph node on the other side is tender and a bit swollen.
(And actually, I've noticed that I'm itchy all over when really bad pain too. In spots, it's an intense really itchy burn. I've actually got bruises going down the back of my knees and calves from itching them.)
I'm such a wreck. What's going on, and what am I even doing here? Bodies aren't supposed to go through all this S@*&! I'm so fed up. The IC and CFS and IBS the PAIN, ugh. Oh, and my mouth has been like this for 9 months, so it's not contagious. But I wonder about the auto-immune stuff too. Maybe my body is attacking my mouth tissue too?
WIERD!
Thank you all for listening. I'd be crazy without ya! http://www.ic-network.com/ubb/frown.gif
I'm worried about the biopsy too, they set it up for Thursday morning.

Well, I'll stop rambling.........
Love you guys!
T

[ICNDonna]

I know this is a totally dumb, off the wall question, but what kind of toothpaste are you using? The reason I ask is that my daughter in law ended up having to have tissue surgically removed around her teeth on one side, caused by toothpaste.

You sound so much like the way I get if I use the wrong laundry soap. Any time I have tried to change, the itching comes back.

Sending warm hugs,
Donna

[Maureen]

I recently had a biopsy done in my mouth as well. They were concerned about Lichen Planur. IT came back as hyperkeritosis in the mouth. They do not know why? I get burnng and some white sores. I was given a Rx mouth wash that numbs the mouth and really helps.

[icnTerri]

Well, they decided to go ahead and biopsy because it's too big to take it all. My dentist wants to wait and find out in case I need more surgery before he fixes more of my teeth...

I did get a prescription for a mouth rinse that contained 4 different ingredients, one they had to order in special, and I'm supposed to rinse with it for 2 min. 4 times a day. It tastes soooooooooooooo awful, but I do notice a bit of relief in the itch so hopefully it'll help more and more!

Thanx for all your input!
Terri

[icnTerri]

Biopsy results:
Diagnosis:
"Inflammatory epithelial hyperplasia with near ulceration"
Docs saw:
multiple 2mm ulcers of the anterior hard palate, redness on section of soft palate, and "geographic tongue" (probably from itching the roof of my mouth so much)
Miscroscopicly heres what they saw:
Sections showing short strips of mucosa covered by intact stratified squamous epithelium but showing central delling. The indented areas demonstrate rete ridge hyperplasia with elongation of ridges that show expanded, bulbous tips. The corresponding connective tissue papillae are suffused with lymphocytes which penetrate the epithelium and are associated with spongiosis and hyperparakeratosis at the surface. No evidence of viral inclusion bodies or candida within the parakeratin. Suprapapillary thinning in the central lesion area is associated with near ulceration.

So they don't know why or what to do(like I've heard anything else with all my illnesses and disorders!), basically have to learn to live with the horrible itching too!

They said check into maybe medications causing it....

This is so lousy. I thought at least this they could make go away. http://www.ic-network.com/ubb/frown.gif

bigh heavy sigh.... I'm so done.

[kimmi158]

{{{{{Terri****************

I have had this,mine was caused from meds everytime.I have it now from the meds its really lousy. http://www.ic-network.com/ubb/rolleyes.gif
This has been happening on and off for a long time for me,any time I start a new med. or up the dose on an old one my mouth does this.The mouth wash I have found to work if you use it everyday for a week or to,also DO NOT BRUSH YOUR TOUNGE WITH YOUR TOOTHBRUSH IT WILL MAKE IT 100 TIMES WORSE.aLL IT DOES WHEN YOU DO THAT IS TAKE THE TOP LAYER OF SKIN OFF.Mine does go away though after a period of time.
Lots of hugs,
Kim

[Dianna Maddison]

TERRI,

I work in a dental office and now have a few patients with IC in our practice. Many many of them have emarked about a severe burning tongue and manyof the other symptoms that you have described. My first question I would ask you if you were a patient in our office is: do you have any metal fillings in your mouth? These could be silver ones(they also all have mercury in them) or gold crowns (caps) or fillings. With the different metals inyour mouth and your saliva as a conductor you are making electrical charges in your mouth. We actually have a tester that shows us what levels of electrical activity you are giving off. Everytime you chew or grind your teeth the level goes way up. In fact if you chew gum the electrical level goes up 60 times.
It is expensive to get amalgam (silver,mercury) fillings out but even if you did them one by one the levels will go down.
You should be able to find a dentist near you that deals with teh safe removal of mercury fillings. You want to get the mercury out of your mouth without it ending up in your liver or kidnesy or some other tissue. AND there are lots of things you can do to help prevent you getting the mercury in your tissues. The two books by ********* ****** - the IC patient that got better - se feels that having her fillings removed was one of the things that helped her IC the most.
Until you go to the dentist yu should make sure that you do not eat anything too chewy or sticky and try not to grind yur teeth. 86% of the population do it during our REM sleep at night. Although not to many IC patients get very much REM sleep. :)
Please feel free t email me if you need any help finding a dentist or if you have any other questions.
diannamaddison@home.com

[SueP1]

Wow, that dental theory is intriguing! I have had more dental work than anyone I know, tons of caps & crowns. Maybe we're just supposed to wear gold- not put it in our mouths. :eek:

[sue041]

Hi, I have some burning in my mouth, but I also have ulcers in my mouth, the only thing that makes them feel better is put milk of magnesia on them or hold cold milk in your mouth, I got a perscription from the dentist it is called.FLUOCINONIDE (generic name) but it works, I had the stuff, that you rinse your mouth with and then swallow it and it did not do anything for me. I also have burning on the bottoms of my feet, wether I wear socks or not. I mostly go bare foot, it kinda helps a little and then I use witch hazel and wipe them off at night. Hope some of this helps you. God Bless You All.

[Amanda]

Maureen,

My mom has a patch of lichen plantus on her face. She went for years without successful treatment, but when I went to a new dermotologist she asked if there was anything new in treatment (she had not seen someone in five years) and she said that she does a type of injection--- my mom had a few and it helped a lot. Although it was never a big deal to her, it was nice to not have to worry about it.

Amanda
(an_johnson@tir.com)

[redstonebef]

I just have now read your posts on mouth burning and itching. I have Lichen Planus. If it gets into my mouth it can cause those same problems with bleeding gums and ulcer like bumps and can get on my tongue also. Have you asked about this Disease? It is rare. I am 54 and have never met another person that has it. I also get it on my body and will last up to a year and half. Thank God I am in remission now. I was dx when I was 12. I can be covered like measles and it hurts and burns and itchs. I hope this is not what it is but you might check. Cortizone will heal it. Not cure but put yooy in remission. But of course like everything else with me I cannot take it. Hugs and good luck and I hope you feel better soon.

redstonebef

[JOJO]

Hi Terri
I just read your Drs. diagnosis,not to sound dumb but when I read what they found can you maybe explain it in simpler terms.I also have had burning on the tongue and the roof of my mouth. Also I know a fellow ICer who went to all kinds of Doctors even a top oral specialist to be told its nothing!! Sometimes I think we also suffer from a "IC" of the mouth.There probaly is a connection but as usual nobody knows nothing,I have seen other woman ofn this site complain of the same thing, including me. We are'nt nuts! Maybe someone should listen to us they might even learn something! Good Luck-JOJO

[darlene]

Terri, so sorry to hear you have a new problem. If it isn't your meds causing the problem, I'm thinking autoimmune again. How about seeing a gastroenterologist, because the mouth is part of that system. He/she might have some new ideas. I hope someone can help you soon.

[darlene]

Terri, so sorry to hear you have a new problem. If it isn't your meds causing the problem, I'm thinking autoimmune again. How about seeing a gastroenterologist, because the mouth is part of that system. He/she might have some new ideas. I hope someone can help you soon.

[darlene]

Terri, so sorry to hear you have a new problem. If your meds are not the cause, I am thinking autoimmune again. How about seeing a gastroenterologist, because the mouth is part of that system. He/she might have some new ideas on treatment. I wish you good luck.

[diddles]

Hi Im a new member and a bit lost in how to use this forum, but anyways here it goes. I have a rough and burning feeling on my tongue, at the moment and it is driving me crazy so I know how you feel. Im not on any meds , but came off anti deppressants which I had been taking for a couple of years about five months ago. So Im hoping it will go away, the ic causes me enough hassle.

[SharonA]

diddles...This is a very old thread, therefore, I am reposting your message and beginning a new thread with it so you will receive more responses. You will find your post in the same section as this one.

ICN - Interstitial cystitis information & support > Related Conditions to Interstitial Cystitis > Dry Eyes/Dry Mouth

I am also closing this thread for the same reason.