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

I have been connected to mayo clinic discussions.can you please tell me how i can give this info.to connect to Mayo clinic discussions.He suffers from all over body pain,and would like to be part of the discussion. .How does he connect???please respond..Thank you Sheetrock 0131

Hi @sheetrock0131,

I'm sorry to hear that he is going through this pain, but so glad to know that he would like join Mayo Clinic Connect, and hopefully get some answers from other members.

Here's some information on How to Get Started;
https://connect.mayoclinic.org/get-started-on-connect/
I would suggest that he set up an account of his own on Connect, by going to this registration page:
https://connect.mayoclinic.org/register/
If you would like additional help, you may also use the following link to contact a community moderator:
https://connect.mayoclinic.org/contact-a-community-moderator/
How are you doing, @sheetrock0131?

Thank you so much. I will discuss this with my Pain Management Doctor. I other medications are not working as they once were. Perhaps I am developing a tolerance. Please let me know if you are taking other medications.

Hi @mfelton,

I am new to this site and just read your posting. I have just been started on Lamotrigine, 25 mg. every other day for a wk. then one per dy. Are you still taking it? Could you tell me what dosage and how long it took to feel a difference? I was initially scared to take it after reading the warning about a possible side effect of a severe rash that could even cause death.. but I am so desperate I decided to try it anyway.
Please let me know if you are still checking in.

Thanks,
Maggie45

Hi uncbball,
Just came across your posting.. Can you tell me the name(s) of any of the newer saliva increasers you've tried?
A rheumatologist gave me pilocarpine (salagen) and then civemeline- the first worked for a while then brought on a chalky taste, the 2nd actually made my mouth drier.
I appreciate it if you can get back to me.

Maggie45

My Name is Patty,in response to the Lamotrigine, i take i twice a day.
Morning and night.25 mil.I to read the side effects and they are scary.Sometimes you just have to overlook them.An asprin also shows deadly results.Just an example.
It didn't take long to kick.in.Keep.me posted.Thanks

Hi Pattty,

Thanks for getting back to me about the Lamotrigine- I thought it might be causing me nausea that I've been experiencing since starting it but I've now started taking it with food at lunch (the last real meal I can seem to eat lately)- which brings me to my next question for you- what are you able to eat? After being given chlorhexidine to help with my dry mouth- not only did the burning start up but I also lost my sense of taste. Foods I was able to eat a year no longer are bearable- I am living off a oatmeal, eggs; no fruits except an apple and most veggies taste awful as does meat. I can only drink water. Even protein smoothies are not going down well. Is this typical of this condition? I am so afraid if I ask my GI Dr. he will want to do another endoscopy -he didn't do the first one where this incompetent forced an instrument down my tortuous, i.e. twisted esophagus which was the start of this on-going nightmare. As a result, I am terrified of even going to an ENT Dr.- they don't believe me when I tell them how painful it is when they examine my throat and spray it with a numbing agent- which only causes me additional pain after it wears off. I am so tired of them treating me like I'm crazy.. I can't tell you how often I think of you- and you are in my prayers because I can't imagine how you have coped all these years you've had to deal with it.

Thank you again.

Maggie 45

I had a very bad problem with this until I was diagnosed with b12 deficiency and started taking supplements. I really truly thought mine was caused from dry mouth from my sleep apnea machine but not . B12 causes a lot of issues with your mouth I also got a lot of sores and ulcers in my mouth and always wondered why.

Have you ever had your b12 checked ? I had similar issues and once I started B12 supplements my tongue was not so sore and my lips didn't burn, also also less cancer sores? Just FYI not diagnosing just maybe helpful info.

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.