I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time.... enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.
Per a recent blood test, my B12 level is good but perhaps a higher dosage is needed to improve my mouth issues. How much were you taking to get some relief? Are there any other treatments that have been beneficial for you? It's been 4 years and I continue to have the burning, swollen lips & tongue, ulcers and I lot of pain. I have not been diagnosed with burning mouth. I do have Lichen Planis which presents with the same symptoms.
I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time.... enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.
Thanks so much for the update. I wanted to let you know that we have recent, ongoing discussions about Lichen Planus on Connect, and I would truly encourage you to take a look, and join the conversation with your experience, and suggestions, if you wish.
Here are some that might interest you:
Does anyone know of any kind of tests you can have to see if you have burning mouth syndrome? I have been suffering with this since 2019 ! Drs don’t know what is it !!
Does anyone know of any kind of tests you can have to see if you have burning mouth syndrome? I have been suffering with this since 2019 ! Drs don’t know what is it !!
I have had it for years also. Mine began when I had Lyme disease years ago. And yes no Dr. seems to have any idea what is causing it. I do believe it might be connected with Sjogren's. and it certainly involves the nerves in part of my tongue and inside of lips. Miserable! I do know that it is a condition of women but no one seems to be investigating that. It makes me think that hormones might be involved.
brennan michaels
I have had it for years also. Mine began when I had Lyme disease years ago. And yes no Dr. seems to have any idea what is causing it. I do believe it might be connected with Sjogren's. and it certainly involves the nerves in part of my tongue and inside of lips. Miserable! I do know that it is a condition of women but no one seems to be investigating that. It makes me think that hormones might be involved.
brennan michaels
Hello Brennan,
Thanks for your response! Mine started in the corners of my mouth, very sore an cracked open. I believe it happened after I drank out of a can in 2019. It flares up on a regular bases. Red and burning on the outside of my lips. My Dr has tried everything, dermatologist, natural path, ENT, now I'm going to an allergy specialist this month. No one seems to know what it is or how to treat it. My Dr pretty well told me there's nothing else he can do.
Hello Brennan,
Thanks for your response! Mine started in the corners of my mouth, very sore an cracked open. I believe it happened after I drank out of a can in 2019. It flares up on a regular bases. Red and burning on the outside of my lips. My Dr has tried everything, dermatologist, natural path, ENT, now I'm going to an allergy specialist this month. No one seems to know what it is or how to treat it. My Dr pretty well told me there's nothing else he can do.
Hi,
Your mouth issue does not sound like mine. Mine is all inside and it feels like the nerves on part of my tongue and the inside of my lips are burning especially after eating or when I am worried.
I had a Zoom appt. with a dermatologist at the Mayo Clinic and his suggestions were no help and he had no idea of the cause except that it is always WOMEN. I do think that has to be a clue but no one seems to want to research the problem
Hi,
Your mouth issue does not sound like mine. Mine is all inside and it feels like the nerves on part of my tongue and the inside of my lips are burning especially after eating or when I am worried.
I had a Zoom appt. with a dermatologist at the Mayo Clinic and his suggestions were no help and he had no idea of the cause except that it is always WOMEN. I do think that has to be a clue but no one seems to want to research the problem
Hi Brennan,
I don’t understand why the Drs don’t want to investigate this! So frustrating 😢
I don’t think I’ll ever know the issue.
Thanks for your information.
It may be time to explore alternative medicine. I would find a certified Chinese herbalist that someplace you could go. But do your research make sure they are certified
I have a burning mouth. I was treated for yeast infection and now I have been to a specialist who deals exclusively with the mouth at a university hospital. He is running some blood tests that have to do with the immune system. I have other autoimmune problems so it seems logical to test for that.I hope they find the problem. Mine is especially painful on the palet and surface of the tongue.
Hi,
Your mouth issue does not sound like mine. Mine is all inside and it feels like the nerves on part of my tongue and the inside of my lips are burning especially after eating or when I am worried.
I had a Zoom appt. with a dermatologist at the Mayo Clinic and his suggestions were no help and he had no idea of the cause except that it is always WOMEN. I do think that has to be a clue but no one seems to want to research the problem
@bren45 I hate to tell you this: most autoimmune diseases affect women. There is ongoing research about the role of hormones and menopause in autoimmune disease. I can post the articles, if you are interested.
Have you seen you dentist for advice?
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Per a recent blood test, my B12 level is good but perhaps a higher dosage is needed to improve my mouth issues. How much were you taking to get some relief? Are there any other treatments that have been beneficial for you? It's been 4 years and I continue to have the burning, swollen lips & tongue, ulcers and I lot of pain. I have not been diagnosed with burning mouth. I do have Lichen Planis which presents with the same symptoms.
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Hug
1 ReactionHi @bjsday,
Thanks so much for the update. I wanted to let you know that we have recent, ongoing discussions about Lichen Planus on Connect, and I would truly encourage you to take a look, and join the conversation with your experience, and suggestions, if you wish.
Here are some that might interest you:
Erosive oral lichen plants http://mayocl.in/2o9tvzM
I have Lichen Planopilaris http://mayocl.in/2nW36Go
Head and neck cancer http://mayocl.in/2o9Qjzk
Does anyone know of any kind of tests you can have to see if you have burning mouth syndrome? I have been suffering with this since 2019 ! Drs don’t know what is it !!
I have had it for years also. Mine began when I had Lyme disease years ago. And yes no Dr. seems to have any idea what is causing it. I do believe it might be connected with Sjogren's. and it certainly involves the nerves in part of my tongue and inside of lips. Miserable! I do know that it is a condition of women but no one seems to be investigating that. It makes me think that hormones might be involved.
brennan michaels
Hello Brennan,
Thanks for your response! Mine started in the corners of my mouth, very sore an cracked open. I believe it happened after I drank out of a can in 2019. It flares up on a regular bases. Red and burning on the outside of my lips. My Dr has tried everything, dermatologist, natural path, ENT, now I'm going to an allergy specialist this month. No one seems to know what it is or how to treat it. My Dr pretty well told me there's nothing else he can do.
-
Like -
Helpful -
Hug
1 ReactionHi,
Your mouth issue does not sound like mine. Mine is all inside and it feels like the nerves on part of my tongue and the inside of my lips are burning especially after eating or when I am worried.
I had a Zoom appt. with a dermatologist at the Mayo Clinic and his suggestions were no help and he had no idea of the cause except that it is always WOMEN. I do think that has to be a clue but no one seems to want to research the problem
-
Like -
Helpful -
Hug
1 ReactionHi Brennan,
I don’t understand why the Drs don’t want to investigate this! So frustrating 😢
I don’t think I’ll ever know the issue.
Thanks for your information.
-
Like -
Helpful -
Hug
1 ReactionIt may be time to explore alternative medicine. I would find a certified Chinese herbalist that someplace you could go. But do your research make sure they are certified
-
Like -
Helpful -
Hug
1 ReactionI have a burning mouth. I was treated for yeast infection and now I have been to a specialist who deals exclusively with the mouth at a university hospital. He is running some blood tests that have to do with the immune system. I have other autoimmune problems so it seems logical to test for that.I hope they find the problem. Mine is especially painful on the palet and surface of the tongue.
-
Like -
Helpful -
Hug
1 Reaction@bren45 I hate to tell you this: most autoimmune diseases affect women. There is ongoing research about the role of hormones and menopause in autoimmune disease. I can post the articles, if you are interested.
Have you seen you dentist for advice?