Sorry for your pain.you are not crazy.i am a 20 plus sufferer of bms.i live less than 6 miles from the Boston area, i have been to Brigham and womens,Tufts cranial facial and pain clinic,Beth Isreal hospital, Mass General Hospital. .There has been no treatment that can help this condition. Meds are the only source of temporary treatment. I am on Cymbalta,Clonazepam, low dose of Oxycodine. The depression is very bad.I am soon to be 67 yrs old.
There are no golden yrs for me.
This condition is so debilitating, somedays i feel like i just can't go on.
I now go to a pain clinic.I recieve nerve blocks,wich intail 25 shots a month.

I also have trigeminal neuralgia.
I am sad for all the people who suffer like me.BMS hits young,old,mostly women.Please feel free to contact me anytime..
I did recently read a story about a woman who suffered for many years with BMS, and she came across a Dr in Colorado.This specialist gave a tounge swab,and found out she was carrying a herpes germ, she caught.
They put her on Valtrex for a month and is rid of her BMS.

I went to see a infectious diseases Dr.Who swabed my mouth ,but found nothing.
She was lucky..
I would give that a try,you have nothing to lose..Good luck,maybe it will be worth the trip to Dr...

I have had BMS for years and have just this past week taken something that has helped. I also have Neuropothy, The Neurologist gave me medication for that and it has really helped my BMS, I wish I had had it 8 or 10 years ago its really made a difference, the medication is Lomotrigine.

I also.am a 20 plus sufferer of bms,and i.also have trigeminal neuralgia. I get anout 25 nerve blocks a month,for the neuralgia, but nothing has helped my bms.
Ive been to many hospitals in Boston,i am currently taking cymbalta and oxycodine, and clonazepam. .
It does interfere in ypur everyday life.
Its a debilating condition.
Somedays i feel like i just cant go on.
I also had accunpuncture, but sadly nothing helps..If you need any quest answered, please feel free to ask
.

Thank you for that information, im going to run it by my neurologist. .Any piece of info.is greatly appreciated. .

So sorry-this is very discouraging because I've only been suffering with the burning, pain and mouth ulcers for 3 yrs and was hoping to find some answers on this website. I've been to 9 different types of doctors with no relief and no diagnosis. After reading all these posts, it appears that there is nothing that can be done. I'm not even sure I have BMS. It was suggested by a couple of dentists that It may be BMS, or autoimune or lichen planis so I just don't know where to turn next. My question to you is have you found any mouth wash/toothpaste that does not burn. Also, most foods and beverages are impossible to eat due to my painful tongue or the burning. Have you been advised to stay away from any particular preservatives or food additives. I wish you well and hope there is help out there somewhere for both of us.

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..

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

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.