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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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. .

Liked by Lisa Lucier

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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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@laci80525

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

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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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@laci80525

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

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

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@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. .

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

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@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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I forgot to mention in my last post that I also take a cocktail of antidepressants along with the gabapentin. A little Wellbutrim, a little Trazodone and 10mg of amitrytaline before bed. That might be helping. But I don’t know why Lyrica alone wouldn’t help all of you? If you have had all the tests and ruled out herpes, infections and cancer it should be the cure. Yes, my BMS gets worse if I’m under stress. So psychotherapy might help lessen the symptoms. But upping the Gabapentin to a max of 900mg per day does the trick for me. Lyrica is the more expensive and the more potent version of Gabapentin. I wish I could afford it because it does a better job.

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Yes!! Now that I think. I also suffer from anxiety and depression. I have been on medication most of my life. I am very very lucky though. My husband is a physician so most medications are easy access to me. Just a yearly visit to my GP and I am set. So maybe the cure is antidepressants AND Lyrica. 150 mg of Bupropion SR (Welbutrim) plus 100 mg Trazodone and 10mg of amitryptoline (which lengthens the effect of the Trazodone) knock me out at night and I hate the groggy feeling I get in the morning. But all my anxiety and dysphoria are gone. I would definitely would ask your doctor if you can try this. Good luck!

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@laci80525

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

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Thanks for the information. This is helpful.

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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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If one received Botox it seems you’d keep biting your tongue. I would say that it’s not fda approved. That would mean that it has been tested and a call far and wide Had gone out for test subjects. As bad as bms is I would never be a test subject for the injections. I do realize that there is times all of us suffering from this would trade years of our lives for a cure. There is a difference between fda approved and fda cleared. Cleared means that it will not hurt you and approved means it’s been rigorously tested and shown to be effective. Mark my word 1 Day Science and Medicine will understand it and then
BMS sufferers will have a treatment and hopefully a cure. Until that day comes we all have to help ourselves and continue to discuss it in forums like this. We just can’t give up hope.

Liked by Lisa Lucier

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@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. .

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The MRI ,and I add ,I had at least 3.
They show nothing.Always same answer.
Brain is fine.
There is an operation, Dr goes into the part of the brain,where the nerve that’s causing your mouth to burn
Then they put a sponge under that nerve,so it rests on the sponge and pain free.
It is such a delicate procedure,it’s a risk.
Ypu can have a stroke, possibly die,I’m not sure it even lasts long.
I just know the pain ctr.where I go, says absolutely no.
He said extreme, what the heck am i???

Liked by lauren123

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