Discussions By Condition: I cannot get a diagnosis.

Burning tingling tongue, painful

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: cebujack
  • September 18, 2007
  • 00:01 PM

I have had a very painful burning, tingling tongue for two months now. It is not acid reflux. I am taking vitamins to no avail. I get sores on my tongue. Been treated for thrush. Been in hospital, had blood tests, still no help. Been to ENT specialist, gastronolgist, still no help. It does not let up. Any help out there?:confused:

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  • Are you a woman nearing menopause? Hormone Replacement Therapy cured me. Sorry, I don't know what to tell you if you are a man. Will andropause and lowered testosterone levels cause the same problem? Here are some other possible solutions. The possible causes of burning mouth syndrome are many and complex. Each of the following possible causes applies to only a portion of all people who complain of a burning mouth. Many people have multiple causes. Identifying all of the causes is important so that your doctor can develop a treatment plan tailored for you. Possible causes include:Dry mouth (xerostomia). This condition can be related to use of certain medications, including tricyclic antidepressants, central nervous system depressants, lithium, diuretics and medications used to treat high blood pressure. It can also occur with aging or Sjogren's syndrome, an autoimmune disease that causes both dry mouth and dry eyes. Other oral conditions. Oral yeast infection (thrush) is a common cause of a burning mouth that may also occur with other causes, such as diabetes, denture use and certain medications. Geographic tongue, a condition that causes a dry mouth and a sore, patchy tongue, also may be associated with burning mouth syndrome. Psychological factors. Emotional disorders, such as anxiety and depression, are often associated with burning mouth syndrome, as is an extreme fear of cancer. Although these problems can cause a burning mouth, they may also result from it. Nutritional deficiencies. Being deficient in nutrients, such as iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12), may affect your oral tissues and cause a burning mouth. These deficiencies can also lead to vitamin deficiency anemia. Irritating dentures. Dentures may place stress on some of the muscles and tissues of your mouth. The materials used in dentures also may irritate the tissues in your mouth. Nerve disturbance or damage (neuropathy). Damage to nerves that control taste and pain in the tongue may also result in a burning mouth. Allergies. The mouth burning may be due to allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or other substances. Reflux of stomach acid (gastroesophageal reflux disease). The sour- or bitter-tasting fluid that enters your mouth from your upper gastrointestinal tract may cause irritation and pain. Certain medications. Angiotensin-converting enzyme (ACE) inhibitors, used to treat high blood pressure, may cause side effects that include a burning mouth. Oral habits. These include often-unconscious activities, such as tongue thrusting and teeth grinding (bruxism), which can irritate your mouth. Endocrine disorders. Your oral tissues may react to high blood sugar levels that occur with conditions such as diabetes and underactive thyroid (hypothyroidism). Hormonal imbalances, such as those associated with menopause. Burning mouth syndrome occurs most commonly among postmenopausal women, although it affects many other people as well. Changes in hormone levels may affect the composition of your saliva. Excessive irritation. Irritation of the oral tissues may result from excessive brushing of your tongue, overuse of mouthwashes or consuming too many acidic drinks.Often, more than one cause is present. Despite careful evaluation, doctors are sometimes unable to find the cause of burning mouth symptoms.http://www.mayoclinic.com/images/nav/elem_sectionarrow_previous.gif
    rad-skw 1605 Replies
    • September 19, 2007
    • 09:29 AM
    • 0
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  • I have had a very painful burning, tingling tongue for two months now. It is not acid reflux. I am taking vitamins to no avail. I get sores on my tongue. Been treated for thrush. Been in hospital, had blood tests, still no help. Been to ENT specialist, gastronolgist, still no help. It does not let up. Any help out there?:confused:hi I just saw your message. Hopefully you are reading this message. I have the very same problem with you. When you were in the hospital did they put you on drip because it got rid of the tingling sensation on my tongue for about 3 months. It has returned since last sunday. If it gets worse i will ask the doctor to put me on drip again.
    Anonymous 42789 Replies Flag this Response
  • I have had a very painful burning, tingling tongue for two months now. It is not acid reflux. I am taking vitamins to no avail. I get sores on my tongue. Been treated for thrush. Been in hospital, had blood tests, still no help. Been to ENT specialist, gastronolgist, still no help. It does not let up. Any help out there?:confused:Below is my post from 3-12-10. We have similar stories. It has been a 3 year journey for me and I am still in pain/misery and still have no diagnosis or treatment. You may want to have biopsies done. I wish you the best of luck with your treatment."I am a 35 year-old female in relatively good health. In June 2007, I had an erruption of lesions (20+) in my mouth that would not go away. At first I thought it was just cold sores/mouth ulcers, which I have had many, many times, but these felt different, hurt differently, and again, would not go away. They became so severe that I could not eat and could barely talk. They mainly affected my tongue, but felt like they were in my throat as well. I went to my PCP after about 4 weeks. He put me on an anti-inflamatory - with no success. I went back to him and he put me on Valtrex, again, no success. Again I went back to him and he put me on a round of steroids. After 3 days, they were better but quickly returned once I was off the steroids. After seeing several other doctors/specialists (who did nothing), my PCP sent me to a dermatologist. She did biopsies and diagnosed me with oral erosive lichen planus (OELP). She put me on methotrexate and high-dose steroids. Long story short, I had to stop taking the medication after a few months due to a severe drug reaction to the steroids. The lesions of course came back and continued to mainly affect my tongue. Each time they flare up, I also have flu-like symptoms (achy, fatigued, just overall "I'm getting sick" feeling). In early 2009, continuing my quest for relief, I went to an oral surgeon. He did biopsies (from my tongue this time) and had immunofluorescence testing done on the tissue. The results came back that it was something (lichenoid reaction?????mucosa????something), but it wasn't OELP. He seemed very unconcerned and offered no treatment or additional testing. I have seen a total of 9 doctors/specialists and I am still at square one. The majority of the 9 feel it is autoimmune, but that is about as far as they are willing to go to diagnose. The minority just calls it chronic aphthus ulcers (canker sores) and sends me on my way. I know it isn't canker sores - I have had those many times and it isn't the same. I am still having flare ups (mild to severe) and still have the flu-like symptoms EACH time I flare up. I have also had 2 negative ANA tests for lupus (aside from the biopsies, that is the only other testing done). It does appear that stress can cause or worsen a flare up - I had just finished my 2nd year of law school when this all started and had a severe flare up recently after taking the bar exam, and there have been other instances when I saw the correlation between stress and the flares. I am currently experiencing another flare up - I haven't had solid food in almost 2 weeks. I have to find out (1) what is causing this; (2) what's the treatment for it; (3) how do I get relief? I don't know where to begin...again. Do I go the medical route or dermatological route? I have even considered the Mayo Clinic. Can anyone offer any advice?"
    Anonymous 42789 Replies Flag this Response
  • Below is my post from 3-12-10. We have similar stories. It has been a 3 year journey for me and I am still in pain/misery and still have no diagnosis or treatment. You may want to have biopsies done. I wish you the best of luck with your treatment."I am a 35 year-old female in relatively good health. In June 2007, I had an erruption of lesions (20+) in my mouth that would not go away. At first I thought it was just cold sores/mouth ulcers, which I have had many, many times, but these felt different, hurt differently, and again, would not go away. They became so severe that I could not eat and could barely talk. They mainly affected my tongue, but felt like they were in my throat as well. I went to my PCP after about 4 weeks. He put me on an anti-inflamatory - with no success. I went back to him and he put me on Valtrex, again, no success. Again I went back to him and he put me on a round of steroids. After 3 days, they were better but quickly returned once I was off the steroids. After seeing several other doctors/specialists (who did nothing), my PCP sent me to a dermatologist. She did biopsies and diagnosed me with oral erosive lichen planus (OELP). She put me on methotrexate and high-dose steroids. Long story short, I had to stop taking the medication after a few months due to a severe drug reaction to the steroids. The lesions of course came back and continued to mainly affect my tongue. Each time they flare up, I also have flu-like symptoms (achy, fatigued, just overall "I'm getting sick" feeling). In early 2009, continuing my quest for relief, I went to an oral surgeon. He did biopsies (from my tongue this time) and had immunofluorescence testing done on the tissue. The results came back that it was something (lichenoid reaction?????mucosa????something), but it wasn't OELP. He seemed very unconcerned and offered no treatment or additional testing. I have seen a total of 9 doctors/specialists and I am still at square one. The majority of the 9 feel it is autoimmune, but that is about as far as they are willing to go to diagnose. The minority just calls it chronic aphthus ulcers (canker sores) and sends me on my way. I know it isn't canker sores - I have had those many times and it isn't the same. I am still having flare ups (mild to severe) and still have the flu-like symptoms EACH time I flare up. I have also had 2 negative ANA tests for lupus (aside from the biopsies, that is the only other testing done). It does appear that stress can cause or worsen a flare up - I had just finished my 2nd year of law school when this all started and had a severe flare up recently after taking the bar exam, and there have been other instances when I saw the correlation between stress and the flares. I am currently experiencing another flare up - I haven't had solid food in almost 2 weeks. I have to find out (1) what is causing this; (2) what's the treatment for it; (3) how do I get relief? I don't know where to begin...again. Do I go the medical route or dermatological route? I have even considered the Mayo Clinic. Can anyone offer any advice?"Everything you have said, reminds me of what I have just gone through for the first time. I am a 29year old female. My tongue was so painful and burning with white patches all over it, for 2 weeks I couldn't eat. I had fever, swollen glands & swollen bleeding gums. My doctor told me I have gingivostomatitis. I am now at 3 weeks, and past the worst but the tip of my tongue is still really tingly and sensitive, and I have a creamy feeling all over my teeth. My gums still bleed alot too.Let me know how you go and what the outcome ends up being.
    Anonymous 42789 Replies Flag this Response
  • Everything you have said, reminds me of what I have just gone through for the first time. I am a 29year old female. My tongue was so painful and burning with white patches all over it, for 2 weeks I couldn't eat. I had fever, swollen glands & swollen bleeding gums. My doctor told me I have gingivostomatitis. I am now at 3 weeks, and past the worst but the tip of my tongue is still really tingly and sensitive, and I have a creamy feeling all over my teeth. My gums still bleed alot too.Let me know how you go and what the outcome ends up being.I am a 41 year male who started to develop these burning tongue sensations back in February 2011. I didn't think much of it at first, until it wouldn't go away. It is now August and my tongue still burns with symptoms increasingly worsening. Lesions began to appear last month and flare ups in the increase. I too would get flu-like symptoms during each flare up. I have taken blood tests, two saliva samples, nothing. I have sought acupuncture and TCM the past two weeks, and although the flu-like symptoms have disappeared, my tongue continues to get patchy and burning with lesions along the edge an tip of my tongue. Any advice??
    Anonymous 42789 Replies
    • August 16, 2011
    • 03:11 PM
    • 0
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  • I have been dealing with dry mouth/ burning tongue for five months. I have had the blood tests, stopped using c-pac machine, stopped using mouth guard, using special toothpaste, avoiding all acids and salts, tried the zinc, herbs, etc. etc. and no help. I am weaning off of depression meds. to help- don't know. I am going to ask about trying hormone replacement. I can not stand this much longer. I have spent a fortune, tried everything, gone to tons of so called specialists and no one has an answer. If HRT worked for you, did you have other symptoms besides the burning tongue> I am going to my doc tomorrow and asking if I can try this. My gyn. didn't think that this was the answer, but I am desperate. Are you a woman nearing menopause? Hormone Replacement Therapy cured me. Sorry, I don't know what to tell you if you are a man. Will andropause and lowered testosterone levels cause the same problem? Here are some other possible solutions. The possible causes of burning mouth syndrome are many and complex. Each of the following possible causes applies to only a portion of all people who complain of a burning mouth. Many people have multiple causes. Identifying all of the causes is important so that your doctor can develop a treatment plan tailored for you. Possible causes include:Dry mouth (xerostomia). This condition can be related to use of certain medications, including tricyclic antidepressants, central nervous system depressants, lithium, diuretics and medications used to treat high blood pressure. It can also occur with aging or Sjogren's syndrome, an autoimmune disease that causes both dry mouth and dry eyes. Other oral conditions. Oral yeast infection (thrush) is a common cause of a burning mouth that may also occur with other causes, such as diabetes, denture use and certain medications. Geographic tongue, a condition that causes a dry mouth and a sore, patchy tongue, also may be associated with burning mouth syndrome. Psychological factors. Emotional disorders, such as anxiety and depression, are often associated with burning mouth syndrome, as is an extreme fear of cancer. Although these problems can cause a burning mouth, they may also result from it. Nutritional deficiencies. Being deficient in nutrients, such as iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12), may affect your oral tissues and cause a burning mouth. These deficiencies can also lead to vitamin deficiency anemia. Irritating dentures. Dentures may place stress on some of the muscles and tissues of your mouth. The materials used in dentures also may irritate the tissues in your mouth. Nerve disturbance or damage (neuropathy). Damage to nerves that control taste and pain in the tongue may also result in a burning mouth. Allergies. The mouth burning may be due to allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or other substances. Reflux of stomach acid (gastroesophageal reflux disease). The sour- or bitter-tasting fluid that enters your mouth from your upper gastrointestinal tract may cause irritation and pain. Certain medications. Angiotensin-converting enzyme (ACE) inhibitors, used to treat high blood pressure, may cause side effects that include a burning mouth. Oral habits. These include often-unconscious activities, such as tongue thrusting and teeth grinding (bruxism), which can irritate your mouth. Endocrine disorders. Your oral tissues may react to high blood sugar levels that occur with conditions such as diabetes and underactive thyroid (hypothyroidism). Hormonal imbalances, such as those associated with menopause. Burning mouth syndrome occurs most commonly among postmenopausal women, although it affects many other people as well. Changes in hormone levels may affect the composition of your saliva. Excessive irritation. Irritation of the oral tissues may result from excessive brushing of your tongue, overuse of mouthwashes or consuming too many acidic drinks.Often, more than one cause is present. Despite careful evaluation, doctors are sometimes unable to find the cause of burning mouth symptoms. http://www.mayoclinic.com/images/nav/elem_sectionarrow_previous.gif
    wondering why 2 Replies
    • August 18, 2011
    • 03:50 AM
    • 0
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  • Definition By Mayo Clinic staffGeographic tongue is a harmless condition affecting the surface of your tongue. The tongue is normally covered with tiny, pinkish-white bumps (papillae). With geographic tongue, patches on the surface of the tongue are missing papillae and appear as smooth, red "islands," often with slightly raised borders.These patches (lesions) give the tongue a map-like, or geographic, appearance. The lesions often heal in one area and then move (migrate) to a different part of your tongue. Geographic tongue is also known as benign migratory glossitis.Although geographic tongue may look alarming, it doesn't cause health problems and isn't associated with infection or cancer. Geographic tongue can sometimes cause tongue discomfort and increased sensitivity to certain substances
    Anonymous 42789 Replies
    • August 21, 2011
    • 10:04 AM
    • 0
    Flag this Response
  • Below is my post from 3-12-10. We have similar stories. It has been a 3 year journey for me and I am still in pain/misery and still have no diagnosis or treatment. You may want to have biopsies done. I wish you the best of luck with your treatment."I am a 35 year-old female in relatively good health. In June 2007, I had an erruption of lesions (20+) in my mouth that would not go away. At first I thought it was just cold sores/mouth ulcers, which I have had many, many times, but these felt different, hurt differently, and again, would not go away. They became so severe that I could not eat and could barely talk. They mainly affected my tongue, but felt like they were in my throat as well. I went to my PCP after about 4 weeks. He put me on an anti-inflamatory - with no success. I went back to him and he put me on Valtrex, again, no success. Again I went back to him and he put me on a round of steroids. After 3 days, they were better but quickly returned once I was off the steroids. After seeing several other doctors/specialists (who did nothing), my PCP sent me to a dermatologist. She did biopsies and diagnosed me with oral erosive lichen planus (OELP). She put me on methotrexate and high-dose steroids. Long story short, I had to stop taking the medication after a few months due to a severe drug reaction to the steroids. The lesions of course came back and continued to mainly affect my tongue. Each time they flare up, I also have flu-like symptoms (achy, fatigued, just overall "I'm getting sick" feeling). In early 2009, continuing my quest for relief, I went to an oral surgeon. He did biopsies (from my tongue this time) and had immunofluorescence testing done on the tissue. The results came back that it was something (lichenoid reaction?????mucosa????something), but it wasn't OELP. He seemed very unconcerned and offered no treatment or additional testing. I have seen a total of 9 doctors/specialists and I am still at square one. The majority of the 9 feel it is autoimmune, but that is about as far as they are willing to go to diagnose. The minority just calls it chronic aphthus ulcers (canker sores) and sends me on my way. I know it isn't canker sores - I have had those many times and it isn't the same. I am still having flare ups (mild to severe) and still have the flu-like symptoms EACH time I flare up. I have also had 2 negative ANA tests for lupus (aside from the biopsies, that is the only other testing done). It does appear that stress can cause or worsen a flare up - I had just finished my 2nd year of law school when this all started and had a severe flare up recently after taking the bar exam, and there have been other instances when I saw the correlation between stress and the flares. I am currently experiencing another flare up - I haven't had solid food in almost 2 weeks. I have to find out (1) what is causing this; (2) what's the treatment for it; (3) how do I get relief? I don't know where to begin...again. Do I go the medical route or dermatological route? I have even considered the Mayo Clinic. Can anyone offer any advice?"I have pretty much what you describe. The part that gets me more than the mouth burning is the flu-like feeling all over my body. I've had this for almost three months now--with a two week period during which there was partial relief. Any new answers? Hope? Anything? Thanks.
    Kitchen 1 Replies
    • September 25, 2013
    • 09:31 PM
    • 0
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