1. < Skin Health

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

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lauren123 | @lauren123 | Dec 5, 2017
In reply to @laci80525 "I found out it is caused by virus.That was after testing done." + (show)
@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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lauren123 | @lauren123 | Dec 5, 2017
In reply to @laci80525 "I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed..." + (show)
@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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lauren123 | @lauren123 | Dec 5, 2017
In reply to @laci80525 "I found out it is caused by virus.That was after testing done." + (show)
@laci80525

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

Jump to this post

@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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sheetrock0131 | @sheetrock0131 | Dec 5, 2017
In reply to @laci80525 "I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed..." + (show)
@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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sheetrock0131 | @sheetrock0131 | Dec 5, 2017

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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4 replies
phyllisrn | @phyllisrn | Dec 5, 2017
In reply to @laci80525 "I found out it is caused by virus.That was after testing done." + (show)
@laci80525

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

Jump to this post

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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phyllisrn | @phyllisrn | Dec 5, 2017
In reply to @laci80525 "I found out it is caused by virus.That was after testing done." + (show)
@laci80525

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

Jump to this post

But, did you try the medication, valtrex? Even after you had a zero load of hvs1. Might still be worth a try.

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sheetrock0131 | @sheetrock0131 | Dec 5, 2017
In reply to @laci80525 "I found out it is caused by virus.That was after testing done." + (show)
@laci80525

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

Jump to this post

Oops,yes I did try the valtrex.
Then Dr called me and said no,I didn't have the virus.

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phyllisrn | @phyllisrn | Dec 5, 2017
In reply to @sheetrock0131 "I have had my mouth swabed for a virus. It showed nothing. MRI's all they say..." + (show)
@sheetrock0131

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. .

Jump to this post

How did a MRI Diagnose your bms, @sheetrock0131 . Or did I just read it wrong.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 5, 2017
In reply to @rgpadilla "Has anyone, even if it is one, that had gone to either the Mayo Clinic in..." + (show)
@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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Hi, @rgpadilla.
Here is information about burning mouth syndrome care at Mayo Clinic and Mayo Clinic Health System, including expertise and ranking https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/care-at-mayo-clinic/mac-20350921

Beyond the 3 main campuses, you may also consider the dermatology department in the Mayo Clinic Health System, Autin MN.

To find out more about Mayo Clinic's experience and expertise in treating burning mouth syndrome, please contact the appointment office at the location of your preference http://mayocl.in/1mtmR63. They can help direct your query to the right person.

You can find more information about billing and insurance here: http://www.mayoclinic.org/patient-visitor-guide/minnesota/billing-insurance and on this webpage http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance. If you have further questions, please contact the business office at Mayo Clinic’s Patient Account Services at 800-660-4582.

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