PHILADELPHIA, PA (WTXF) - It is a mysterious condition that could happen to you, especially if you are a woman.
It appears to come out of nowhere: tingling, burning, and in some cases, your mouth is on fire. It usually doesn't last very long, but when it lingers, watch out and you never know who is suffering in silence.
A familiar face in healthcare and politics reveals her agonizing pain exclusively to our Joyce Evans.
She's a fast talking, down to earth, woman in charge Republican official, who will not be ignored in an overwhelmingly Democratic landscape.
Renee Amoore, a nurse turned business owner and community activist, puts her money where all her mouth is and as much as she can charm out of you.
Her sharp-tongue and gift of gab witnessed regularly here on Good Day Philadelphia, but Renee cannot talk her way out of or force her will with a mysterious and agonizing condition.
Burning mouth syndrome is the medical term for ongoing (chronic) or recurrent burning in the mouth without an obvious cause, according to Mayo Clinic.
"(It can be pretty painful) It can be and the pain and the burning can lead some people to jump off bridges, literally," Dr. Doty said.
Researchers are still trying to pin down exactly what triggers it. It could be medicines, health conditions, maybe even snoring mostly effecting women in their 40's and older.
"In some cases a virus will damage or influence a nerve called the trigeminal nerve. And that's the main place where we believe it comes from," Doty said.
Dr. Richard Doty believes it was a virus in Renee's case that altered or damaged her trigeminal nerve that set off a chain reaction irritation that led to an intense burning sensation and bitter taste throughout her mouth.
"I was like I can't believe this. This is crazy to me," Renee said.
It got even crazier every time she ate or drank something.
"Anything that irritates the membrane of the oral cavity can make it worse," Doty said.
"All the time, Mine is all the time, mine does not come and go," Renee said.
It can also fade away as mysteriously as it does most of the time without any treatment. She's suffering drastic swings in weight loss and weight gain.
"This is ridiculous you know it's like out of control," Renee said.
It was a frustrating two year search for relief that led Renee to the University of Penn's Unique Smell and Taste Center. The center is famous for its ground breaking research, testing methods that are now the standard and treatments that may bring relief, but what else Dr. Doty discovered shocked Renee even more.
"When we tested her sense of smell, she had significant loss of smell," Doty said.
Adding to the bitter taste she's getting from burning mouth was her loss of smell.
"And then when they said I had severe smell damage I was like from what," Renee said.
Doctors believe it’s the same virus.
She's undergone hours of taste and smell testing here. She began to get discouraged because she thinks practicing similar tests with foods and various scents at home is not working either.
“Sucking on Sucrets, it didn't work. Smell in the morning smell at night smell, smell, smell and nothing is happening," Renee said.
She found out this day, but he's hopeful it means relief from the burning may finally be on the way.
"(While it appears her sense of smell is improving which means she'll be tasting things better - what about the burning?) Well that's another issue."
"I'm out to lunch with somebody and they're just eating and I'm like 'Why the heck am I doing this," Renee told FOX 29’s Joyce Evans.
In the meantime, Renee keeps to her hectic schedule of luncheons and fundraising dinners.
"I try to eat something kind of plain," Renee said.
She eats lots of bread and butter, cold bland chicken, cookies, decaf tea and water.
"It's not like cancer you know - your mouth is burning SO WHAT? People don't get it," Renee said.
But she's determined to make sure people like her get help, and that Dr. Doty and team get more funding for research toward a cure.
"(What about the one day you may wake up and it's all gone?) I'll be saying ‘Thank You Jesus’, “Renee said.
If you would like more information about the UPenn Unique Smell and Taste Center, see here.