Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

@laci80525

I found out it is caused by virus.That was after testing done.

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I don’t know where you heard that or what tests were done. I have had BMS for 8 years. Originally I had every test in the book. My husband is a surgeon so I got the most thorough work up available to man. They finally ruled everything out. Also, I am one of those freaks that has a natural immunity to viruses. I have never even had a cold sore.
What clued them into the cure was the fact I had mild polymyasia and Raynaud’s disease. Both neurological disorders. So I started taking Lyrica and OH JOY. Problem solved. Now I am down to 300mg of Gabapentin a day and have never felt better.

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@laci80525

I found out it is caused by virus.That was after testing done.

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I’m confused.What did you mean,where I heard what????I have had this burning mouth syndrome for many many years.
I took gabbapentin . I have been on cymbalta.By the end of the day,nothing helps.My tounge continues to rage on and on.Its referred to by my phsycoligist as the devil in the mouth.
God give strength to all those who suffer from this horrible condition. .

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@laci80525

I found out it is caused by virus.That was after testing done.

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There is an article called one woman’s day,I believe.
She did have a herpes virus, and was given meds.for several weeks, and did have the virus. I went to a infectious disease Dr and had him swipe my tounge.
Sadly it had no viruses.
I do have the article. .It is definitely true.

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@laci80525

I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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I would love to know if you had a nerve block.
I just read an article, some Dr.in Italy, gave his patient botox shots in the tounge. It lasted up to 5 weeks.
No side effects and continued to get more.
I have an appointment in January to see a maxofacial surgeon, it is to ask if F.D.A.
Has approved it..
Please let me know about the block..

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@laci80525

I found out it is caused by virus.That was after testing done.

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I read about that Dr in Colorado.
She helped the woman who carried the herpes virus.
I to tried a infectious disease Dr, had him swab my tounge and mouth.
Sadly, I had no virus. I just have BMS
I’m happy for the person who says her phys.Dr has helped.I have gone to one and nothing helps.I had accunpuncture, healing priests, and hold water from Lordes in France..God bless

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@laci80525

I found out it is caused by virus.That was after testing done.

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What kind of testing did you have done?

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@laci80525

I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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Hello Sheetrock, sorry I have been MIA. I’m glad to be back in the conversation. I’m interested to hear how you are doing overall.

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@laci80525

I found out it is caused by virus.That was after testing done.

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@This is very intriguing as I also have Raynaud’s disease. I don’t know anything about polymyasia. I have tried numerous medications, but now Lyrica. Some doctors really don’t like Gabapentin, but if it works for you I’m happy to hear that. Could you describe polymyasia briefly? Thanks so much.

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@laci80525

I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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I certainly will keep you posted..God bless

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I have had my mouth swabed for a virus. It showed nothing.
MRI’s all they say is I have BMS NO CURE!!!! I don’t know anyone in the 20 plus years I’ve had this.That no meds,or therapist and psychologist can cure it.I’m sorry,but I don’t believe they can take it away.Maybe manage your stresses in your life.We all know and agree that stress heightens the burn,but never completely gone.
My heart goes out to all of the sufferes who have this horrible condition. .

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@laci80525

I found out it is caused by virus.That was after testing done.

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Poly means many. my means muscle asia pain. many muscles in pain. Especially around shoulders and stiff in am. It’s also called polymyasia rheumaticum. It occurs around shoulders upper arms and around thr trunk and thigh on the body.

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