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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@maggie45

Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes... I can't believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn't cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can't find any equivalents here. Is that something you've looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45

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Hi Maggie,sorry it took so long to answer you.I have never done hipnosis,but I certainly would keep it on the table.What harm could it do.I feel for you,just expierencing it,makes me sad,because it has been a long haul for me.It has ducked all the life out of me.If you would like to reply back,or have any questions, please feel free to ask.God Bless you
.

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@maggie45

Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes... I can't believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn't cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can't find any equivalents here. Is that something you've looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45

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Maggie,i did want to mention,i saw a maxofacial dental surgeon
He numbed my tounge to let me see what it would be like if he killed the nerve .It was not easy.I had to place my food in my mouth,and had no feeling.I could easily bite my tounge off.My face vould sag.He told me to weigh it out.After a while of numb tounge,that would wear thin also.
He was a Dr at the Mass General Hospital.
One of the best in the country..
I hope you have good luck somwhere.
I feel for you.Please keep me updated.I wish you the best.

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Believe me,all you have to do is google bms,you can get all the information you need.There are more than a million people suffering from this horrible condition. I say im suffering hell on earth.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life...I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it's either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing...will post my results.

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@susanlcw,
I am new to this site and just came upon your request for names... I'm having the same problem (live in the Buffalo, western NY area and am coming up dry- excuse the pun). I don't care where these specialists may be, I am willing to go where they are. If you're still checking in, I would appreciate your sharing any names you may have received.

Hope you're doing better.

Maggie45

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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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