Hartselle woman has burning mouth

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Hartselle woman has burning mouth
By Deangelo McDaniel
DAILY Staff Writer
dmcdaniel@decaturdaily.com ¨? 340-2469
OCTOBER 29, 2006
THE DECATUR DAILY
HARTSELLE ÇƒÓ What would you do if you could no longer eat pecans, walnuts or cashews?
What if peanut butter, soft drinks, tomatoes and orange juice ÇƒÓ a beverage you had drunk almost daily for more than 60 years ÇƒÓ were suddenly removed from your diet?
That's the hand Hesta Atkins of Hartselle has been dealt. The former insurance agent, who had planned to spend her retirement years traveling, learned in July that she suffers from a rare disease called burning mouth syndrome.
"At times, it feels like I have fish scales in my mouth," said Atkins, who is part of a group of patients doctors are studying.
"This is a very, very complex disorder with no cure at this time," she said. "I have a couple of good days, then I have days where I am crawling the walls."
According to a Mayo Clinic pamphlet, burning mouth syndrome is a condition that "causes a burning sensation or feeling of soreness on the tongue or lips, and sometimes over the entire mouth."
There is no cure.
"Mrs. Atkins understands well that this is a complex pain syndrome and our goal is to improve her quality of life rather than aim for a quick cure," wrote Dr. Alison J. Bruce of the Department of Dermatology at the Mayo Clinic in Rochester, Minn.
At the request of Dr. Dinesh R. Gandhi of Hartselle, Bruce treated Atkins in July.
To eliminate the possibility that food additives might be aggravating Atkins' mouth, the Mayo Clinic did extensive tests to make sure she did not have what Dr. Bruce called "allergic contact stomatitis."
Allergy test
"They had 83 buttons on my back, and I couldn't take a bath for five days," Atkins said. "The test showed that I was not allergic to anything."
After 2¨? weeks, Dr. Bruce diagnosed Atkins with burning mouth syndrome.
"I had never heard of this," Atkins recalled.
Dr. Bruce developed Atkins a plan to manage what she said is probably "neuropathic pain."
"Things are a little better, but I have had to significantly change my diet," Atkins said. "I've lost 20 pounds."
Atkins is part of the second study related to burning mouth syndrome.
In 1999, the Mayo Clinic in Rochester, released the results of 70 patients doctors studied retrospectively who complained about burning or sore mouth symptoms between 1979 and 1992.
They reviewed the medical records of 70 patients ÇƒÓ 56 women and 14 men ÇƒÓ with an average age of 59.
The study did not pinpoint a specific cause of the disease, but doctors concluded that "successful management of the symptoms was possible" in a majority of people with the disease.
"You manage it, but there are times when it's awfully painful," Atkins said.
Start of a painful journey
Her road to the Mayo Clinic started in February 2005 when she was on vacation with J.W., her husband of 47 years. She said her lips "peeled off constantly like they had fish scales."
The symptoms moved to her tongue, then to the roof of her mouth.
"It gradually happened," she recalled.
The symptoms went away, but while hiking in Nova Scotia, Canada, in summer 2005, they returned.
"It felt like I had been drinking boiling coffee," Atkins said.
A Canadian doctor diagnosed her with thrush, a yeast infection normally found on infants' tongues because of milk.
Atkins took four bottles of medication and the problem didn't go away. She could not sleep, so she went to a second doctor in Nova Scotia. He, too, diagnosed her with thrush.
"My entire mouth had blisters, and I got a secondary infection," Atkins said.
She called Dr. Gandhi in Hartselle, and he told her to come home.
"J.W. drove 28 hours to get me here," Atkins said. "I was so sick that there were times when I passed out. We didn't go by home. He drove me straight to Hartselle Medical Center."
She went to a Decatur physician before going to The University of Alabama at Birmingham Hospital for a biopsy.
Two Birmingham pathologists who examined the biopsy couldn't agree on her condition. A third pathologist diagnosed her with thrush.
Between February 2005 and September 2005, five doctors diagnosed Atkins with thrush and another said she didn't have allergies.
Three doctors at the Mayo Clinic in Jacksonville, Fla., treated Atkins three weeks in January 2006. Again, the diagnosis was thrush.
In March 2006, Atkins said she remembers a conversation she had with a woman while vacationing in Lake Placid in September 2005.
"She told me about a professor of oral dermatology at the Mayo Clinic in Rochester," she said. "I decided to send all my records up there and that's when Dr. Bruce diagnosed my problem."
Atkins is now trying the second of five strategies Dr. Bruce recommended. She still has bad and good days, "but at least I know what I have," she said.
She said she decided to share her story because there may be others with the same problem.
"It took me almost two years to find out what I have," Atkins said. "Maybe my story can help one person."