burning mouth syndrome,or bms

Posted by sheetrock0131 @sheetrock0131, Apr 18, 2012

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition…

Liked by lauren123

@ladenole

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.

Jump to this post

Sorry to hear your story..I will tell you ,lichen planus,is completely different from bms.My husband had it for quite a while.The symptons are ulcers in the mouth.He had it on his cheek,in the inside of his mouth.Its terribly uncomfortable, but with special cream,in no time,it was gone..BMS is completely different. He saw a specialist at Tufts clinic in Boston.I also went to Tufts cranial facial clinic,for treatment, but nothing worked.If you would like to discuss this subject further, please dont hesitate. .Im a 20 plus year sufferer..

REPLY
@sheetrock0131

If anyone needs to ask a question,please feel free.im a 20 plus yr sufferer.i gone the whole route..

Jump to this post

Hi …. this sounds absolutely awful … I feel so sorry for you all who have to deal with it. Do they have any idea at all what causes it? It’s obvious, from the number of people who have written, there are a lot of folks living with this, so it seems they should be working on some treatment. I can’t even imagine what you’re going through. If I eat too much chocolate, I’ll get mouth ulcers, or my tongue will burn, but nothing like you’re describing. Mine is my own doing and is gone in a day or so.
I have never heard of this before, but I’m sorry for all of you who are having to deal with it.
abby

REPLY

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

REPLY
@sheetrock0131

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

Jump to this post

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?

REPLY
@ladenole

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.

Jump to this post

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.

REPLY
@ladenole

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.

Jump to this post

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

REPLY
@sheetrock0131

There aren’t any foods that will worsen bms.I have been on cymbalta,clonazepam, and a small dose of Oxycodine. Medication helps only to a point.There is nothing that can completely take it away.My bms started after a learning student gave me a novacaine ,and damaged my nerve.I will have it for the rest of my life..I pray for all who suffer..
Please feel free to contact me by private message.

Jump to this post

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

REPLY
@kanaazpereira

Hello @sheetrock0131 and @ladenole
I cannot even imagine your pain, and how difficult it must be living with Burning Mouth Syndrome for such a long time!

In one of your first posts, @sheetrock0131, you indicated that you were interested in learning more about Mayo Clinic and it’s treatment paths for BMS. Have you visited the Clinic’s overview/treatment options page? If not here is a link:
http://mayocl.in/2ebUG8h

I think you will find a lot of relevant information regarding BMS care at Mayo Clinic. Does this help prepare for your upcoming appointment with the neurologist?

Jump to this post

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

REPLY

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.

REPLY
@ladenole

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.

Jump to this post

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.

REPLY
@ladenole

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.

Jump to this post

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.

REPLY
@ladenole

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.

Jump to this post

Hi @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

REPLY
Please login or register to post a reply.