Burning mouth syndrome (BMS): Is this an autoimmune disease?

Hi @bjsday,

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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.

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.

@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?

I have have burning mouth syndrome for many years. It was diagnosed at Mayo, yet I was given no hint of what I could do for this. I just suffered (not quite in silence) until I mentioned this to my dentist. He recalled another patient who had the same problem. Long story, short: I saw the head of oral pathology at our local dental school and he said only one thing had ever helped some of his patients. His prescription was Clonazepam 0.5 mg. 2-3 times daily. I can get by with two of these per day. It was amazing how much better I felt after beginning the Clonazepam. I was told this is one of those "no cause, no cure" medical conditions. Ah well, just add that to all of the others. My PCP now prescribes this for me and it really does help. Perhaps you will mention this to your doctor. With all good wishes, @joybringer1