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

Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and looking for a doctor who specializes in this. Since it would probably involve multiple visits I am looking for someone in the Twin Cities area.

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@karvar16

Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and looking for a doctor who specializes in this. Since it would probably involve multiple visits I am looking for someone in the Twin Cities area.

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I have seen an oral dermatologist at one point at Mayo but cannot remember her name. I dont think I had burning, but everything tasted funny like metal. Good luck with treatment.

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@karvar16

Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and looking for a doctor who specializes in this. Since it would probably involve multiple visits I am looking for someone in the Twin Cities area.

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I’ve had burning mouth for a couple years. After much research I found that the medication for severe acid reflux and Barrett’s Esophagus had lowered my B-12 and Iron levels to a dangerous level. I started taking supplements and my levels have came back to almost normal. This can also be from chronic dry mouth due to certain medications. I always keep some sugar free mints on me which helps a great deal with having a dry mouth.

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Welcome to Connect @karvar16, @11camaro,

I’m sorry to hear about the pain you are going through; you’ll notice that I moved your message to this group so that you can meet @shellb123, @sheetrock0131, @lauren123, @phyllisrn, @connielaine, @maggie45, @dawn6604, @nanettehathaway, @carolaxis, @maggie45, @kinde, who may be able to provide their valuable insights.

Mayo Clinic in Rochester, Minnesota has a Burning Mouth Syndrome Clinic, http://mayocl.in/2dcrO3F, and although there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This other link will take you to current research developments:
http://mayocl.in/2dpAHFy
Do take a look at the Clinical Trials page of the NIH (National Institutes of Health), as well; here’s a quick link: http://bit.ly/2k6iWyD

@karvar16, @11camaro, how are you coping with your symptoms? Do you have any tips or suggestions for fellow members?

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I’ve read that the burning mouth could be a B vitamin deficiency. I know when I don’t get my B12 injection in a timely manner, I get a burning tongue. Has any doctor ever mentioned that possibility? Did some research and found this article from Mayo. Different issues identified here. http://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/dxc-20179960

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Glad you contacted me.I currently do take the vitamin.One per day.Theres nothing i haven’t taken,that will help my b.m.s.
The medications, plus vitamins,and homemade lozengers I have tried,and sadly nothing has helped.Remember ive had 24plus years to try everything. You name it,ive done it.Im so happy for you,if that vitamin works for you..I pray for all those who suffer with this condition.Its so debilating, it make life harder to go on.
Im also suffering from trigeminal neuralgia, and on a month basis, i receive nerve block shots in the head,temple, neck,fore head,and they are so hard to take.I get 25 shots monthly. Please feel free to contact me anytime.Sometimes im a little late.answering,.My days are spent in bed,with depression. .God bless you.

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Open to discussion on the 24th

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@sheetrock0131

Open to discussion on the 24th

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@sheetrock0131… So very sorry for the suffering you endure. Will hope and pray there’ll be more research and treatment for your condition. I have other issues that cause intermittent pain and depression so I have empathy yet probably don’t fully appreciate the level of discomfort you endure. Take care and I’ll be sending my hopes for healing for you!

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@kanaazpereira

Welcome to Connect @karvar16, @11camaro,

I’m sorry to hear about the pain you are going through; you’ll notice that I moved your message to this group so that you can meet @shellb123, @sheetrock0131, @lauren123, @phyllisrn, @connielaine, @maggie45, @dawn6604, @nanettehathaway, @carolaxis, @maggie45, @kinde, who may be able to provide their valuable insights.

Mayo Clinic in Rochester, Minnesota has a Burning Mouth Syndrome Clinic, http://mayocl.in/2dcrO3F, and although there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This other link will take you to current research developments:
http://mayocl.in/2dpAHFy
Do take a look at the Clinical Trials page of the NIH (National Institutes of Health), as well; here’s a quick link: http://bit.ly/2k6iWyD

@karvar16, @11camaro, how are you coping with your symptoms? Do you have any tips or suggestions for fellow members?

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As far as coping,I hate waking up every morning to tace the horrible condition.zi suffer from depression and anxiety. It has taken the golden years away from me.As a retired woman,my husband and i own an r.v.and go south for the winter.I spend most of my days in bed,i get depressed, because,i hardly engage in activities.Friends are enjoying the day,im indoors resting.God Bless all..

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@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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I do not know about lazer treatment,but i have hears of a surgery that a sponge is put in the area where the nerve is,that causes this burn.The nerve rests on the sponge,and you no longer.feel the burn.
No Dr.That i have come across would be willing,and believe me,i have seen many..
Very dangerous, apparently you can suffer a stroke,and many other complications can happen
My heart goes out to all those who suffer..

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@connielaine

Have suffered with bms for over 25 years-everyday. Tried many melds. Believe Lyrica helps a little.
I find wearing a bite plate during night takes away the pain. Try it.

Elaine

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Hi Elaine,im happy to hear something works for you.I am on cymbalta,and many other meds.Through the years,i have tried.everything. I just started to take a med.called Lamotrigine, at first it helped,but l8ke everything else,after a while,it stops work. .If it works for you,i pray you stay on path to feeling well.

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Nothing works for me -have suffered everyday for over 25 years. Maybe med. cannibus might help. Would try anything at this stage. Tranquilizers have very little effect. Have stiffness in jaw also.
Any helpful suggestions are welcome.
Elaine

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