Anyone faniliar with burning tongue?

In March I started with ulcers on my inner cheeks and inner corners of my mouth. My PC Doc thought it was herpes, treated me for herpes and sent me for blood work in 6 weeks. Negative for herpes. Asked to be referred to oral surgeon. Also started having a burning sensation on the tip of my tongue, along with enlarged papillae.

Oral surgeon tried the elimination theory. Treated me for viral infection, auto immune, fungus and yeast infections , along with a biopsy of one of the ulcers. All treatments unproductive and biopsy came back as "nonspecific ulcer", which didn't tell us anything. Also had a regular dental app't in the interum and when I arrived my mouth was too sore so I refused the cleaning.

Oral surgeon sent me to U of P to a specialist. Now very few ulcers, which only last one day, but very sore tongue. He thinks I am biting my cheeks ( which if I am it has to be at night because I don't do it diring the day), says ulcers don't only last one day so it can't be ulcers. I had no mouth ulcers when he saw me. Wasn't concerned about my tongue because "lots of post menopausal women get this" (so who cares?) and ordered a CBC (normal), iron level (normal), folate (normal and B12 ( very, very high).

I go back in 2 weeks but I'm at my wits end. The ulcers are no longer a problem because they occur so seldom but my tongue is driving me crazy.

Anyone have any experience with this? I know lots of post menopausal women and none of them have this. I guess the oral surgeon at U of P knows different people than I do.

My local oral surgeon and I think it is some of the medication I am taking but can't stop any of them to test that theory. Internet does not list these as side effects of any of my prescriptions.

Sorry this is so long but I'm going crazy.

I am not familiar in anyway with your problem, but I do sympathize with you. It must be very painful, since I know the mouth is very sensitive.

All the best and hopefully you get well soon.

Are you sure it's not fissured or geographic tongue? That's a benign condition that's more common than you'd think. Hot liquids, spicy foods and such can aggravate a geographic tongue more often than a "normal" tongue.

On Nov. 12th Dr. Donahue's medical column had an article on burning tongue syndrome. Read it here.
I hope it helps.

I have a friend who suffers from "burning tongue syndrome," though not as bad as you describe your's. Her doctors have decided it's related to acid reflux and stress.

Don,

Thanks for the article.

I quit using my mouthwash in June and started rinsing with hydrogen peroxide. No improvement. I guess I'll give the benedryl and kaopectate mixture a try because I have nothing to lose but I'll forget the tobasco sauce. My neighbors may hear me screaming with that one. Plus just the thought of tobasco on my tongue makes me cringe.

I've used Colgate toothpaste all of my life. Wouldn't know what ingredients to look for on a change of toothpaste.

Had the B vitamin blood test. No deficiencies, but enough B12 to last my lifetime. Had CBC (no anemia or diabetes), had thyroid blood tests (all normal). My sister had lichen planus so that was the 1st suggestion I gave each of the Docs I saw. They say lichen planus has a specific pattern and mine doesn't fit the pattern).

Glynda, I don't have acid reflux and not aware of stress but I guess if we were aware of it, it wouldn't cause problems.

I appreciate all the responses. I guess I'll just have to live with this and chalk it up to another symtom of old age. Will post again after my follow up visit with the high priced oral surgeon at U of P.

Kay,

Here's some additional reading -

Burning Mouth Syndrome

Glossodynia or Burning Mouth Syndrome (BMS)

Burning Mouth Syndrome article from Mayo Clinic

Richard

It's a long shot, but have you been eating any different types of food lately? I've had the problem you describe on my tongue whenever I eat at my favorite (formerly favorite I guess) Indian buffet. I'm pretty sure it's one of the whole spices in the rice - I think whole cardamom, but I'm not quite sure. I do not have the rest of the problems you've described, though.

I had an extremely bad case of stomatitis - burning tongue. Causes among other things; iron, riboflavin, pyridoxine (b6) deficiency. It took several months to get over this.

In my case it was iron and vitamin D deficiency. It was a storage problem and was found by checking ferritin levels (not by doing cbc) and testing Vit D.
I'm still not back eating spicy foods, but I can eat reg mustard again

I am also the menopause age and my doc tested estrogen levels and r/o menopause. I also take B's and my blood levels show plenty of folate.

I know what your going through is a miserable experience.

I did switch over to biotene and it has helped some. Other toothpastes are just way too bitey.
www.biotene.com/products/toothpaste.asp

Kay:

Do you take lots of B and other vitamins? Try reducing the dosages. If you normally eat a lot of fried or spicy food, stop eating those.

Also, American ginseng tea might help. You can get plastic-wrapped packaged boxes (usually in gold and/or red colors) of tea bags in some Asian drug or grocery stores. Be sure you are getting American ginseng and not any other kind (e.g. Korean or Siberian ginseng) - the other kinds have the opposite effect. Steep to make tea just like using regular tea bags. The recommended dosage is usually one or two bags. For quicker medicinal use I would use 4 bags once in the morning and once in the early evening (but don't drink it too late in the evening because it could keep you awake at night), and reduce the number of bags down to normal after you have seen some improvement, or a couple of days. You can drink American ginseng tea as a health drink on an ongoing basis, but stop or reduce the dosage if you feel slightly dizzy occasionally.

That's an easy Asian home remedy that has helped me tremendously when I have symptoms like yours (although not as severe). Hope it helps you too. Let us know how you do. Take care.

You guys are so helpful with all of your suggestions. I purchased biotene toothpaste last night and kaopectate and benedryl to swish my mouth a few times a day as was recommended on an internet site. I'm afraid of taking ginseng or any other product that is not regulated because I am on medication for an irregular heartbeat and don't want to take a chance on screwing that up.

All that I read indicates that there is no known cause therefore no known cure. I will not take any anticonvulsants or antidepressants that some physicians are prescribing because there is no proof that it helps. I am willing to try any palliative treatment and may just have to accept that it is an inconvenience I'll have to live with. It is very frustratring but not life threatening. Some days the pain is worse than others and after 7 months I should be used to it.

Thanks so much for your suggestions. I truly appreciate it.