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

@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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There is not a cure. The dr’s can’t even agree if the dentist, neurologist or primary doctor should take care of it. BMS has been in my life since 1994. I went to Mayo clinic way back then and they said I needed to see a psychiatrist, now they say “We know more than anyone.”
The only thing that has helped me is to take a small dose of potassium chloride, 1/4 of a tablet RX. You can take too much of it so don’t increase. Other than that I have tried many many things and I would not allow any dr or researcher to experiment on me. Never! It hard to say but there are only things that may help, many things that can hurt you, so it’s up to you to find your own thing that helps your BMS.

Liked by lauren123

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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?

Jump to this post

Do you have to have a prescription for potassium chloride ?

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After 7 years with BMS I can say my life is finally changing for the BETTER. Not everyone will agree but please hear me out. I tired drugs, acupuncture, water, closing myself off and lots and lots of testing. Finally a friend suggested his psychiatrist. Right..I almost ended it….SO I gave her a chance. My way, no drugs, I can quit when I want and she have to be a believer in God. In the first months I saw her weekly then twice a month and on the second year once a month and after two years I felt I was able to handle it on my own. So far so good. I have flare ups but I usually can quiet them. I now understand what happens and why and how to help myself. The best thing for ME was the punching bag in my basement. When it flares up I get down there right away.I yell and scream at the people who are upsetting me. Most of the time its decisions that are being made for me, about me that I have no say in. Stuff from my dad to my kids and from my husband. This is NOT stuff that hurts me but things that affect me on a daily basis. I have always done for others and gotten stepped on because I didn’t make a big issue about it. NOT NOW ! I push back and I fight back. It’s my time so leave it alone.Best of luck to you all. Margie

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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?

Jump to this post

Yes. There is an otc potassium pill but I can’t speak to the efficacy to that. I’m on lasix and I need it as a supplement to the diuretic. Talk to you dr because you can take too much. So don’t do it on your own. I can’t imagine a doctor would refuse such a low dose as 1/4 tab, but it’s not a drug you play with. It’s a drug that can affect the electric current of your heart. That’s why I say talk to your dr.

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@margaretdaniels

After 7 years with BMS I can say my life is finally changing for the BETTER. Not everyone will agree but please hear me out. I tired drugs, acupuncture, water, closing myself off and lots and lots of testing. Finally a friend suggested his psychiatrist. Right..I almost ended it….SO I gave her a chance. My way, no drugs, I can quit when I want and she have to be a believer in God. In the first months I saw her weekly then twice a month and on the second year once a month and after two years I felt I was able to handle it on my own. So far so good. I have flare ups but I usually can quiet them. I now understand what happens and why and how to help myself. The best thing for ME was the punching bag in my basement. When it flares up I get down there right away.I yell and scream at the people who are upsetting me. Most of the time its decisions that are being made for me, about me that I have no say in. Stuff from my dad to my kids and from my husband. This is NOT stuff that hurts me but things that affect me on a daily basis. I have always done for others and gotten stepped on because I didn’t make a big issue about it. NOT NOW ! I push back and I fight back. It’s my time so leave it alone.Best of luck to you all. Margie

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If the psychiatrist works for you then it works for you. I’m glad you found your “thing” that helps your BMS.

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

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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?

Jump to this post

@phyllisrn, I just saw your post and I saw that you said you went to Mayo in 1994. Have you been seen by anyone at Mayo, or anywhere since then? Do you know if there have been any advancements in treatment since then? Rosemary

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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Ms Laci you may be onto something. I looked that up and the article said this 65 yr old Dr Nagel (see recent post from someone else,) has found the herpes 1 virus causes it. I’ve never heard anything about that research. The anti-viral drug used for that was Valtrex which I currently use when I have fever blisters but I don’t take it for the length of time recommended by Dr Nagel. I encourage others to look this up. I’ll let everyone know how my valtrex works. If this works Ms Laci I will send you a present.

Liked by Lisa Lucier

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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?

Jump to this post

Yes I haven seen by other drs yes at Mayo and tested soooomuch and acupuncture, but please see my recent post from 2 min ago.

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@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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