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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laci80525 | @laci80525 | Dec 5, 2017

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

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11 replies
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Rosemary, Volunteer Mentor | @rosemarya | 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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@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

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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

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.

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phyllisrn | @phyllisrn | 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?

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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bswtwa | @bswtwa | 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

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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1 reply
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

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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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

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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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 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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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

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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