E-Mail Empathy Health Advice Available On-Line, But Some Doctors Skeptical

By the middle of the day, Tammy Peterson often feels like she’s staring through a film of Vaseline. About a month ago, her left eyelid fell to half-mast.

She consulted a team of doctors. An ophthalmologist said nothing was wrong. Her neurologist said it could be “myokymia.” Her internist said possibly a hemifacial spasm.

“I could not see out of my left eye,” said Peterson, who lives in Spokane. “It was half-closed. I looked like Igor.”

Frustrated by doctors who didn’t explain themselves, she turned to her computer and logged onto the Internet. She asked a question in a vision discussion group about myokymia, a sporadic twitching of part of the eyelid muscle often caused by fatigue.

“Was told by my neurologist that I may have this,” Peterson tapped on her keyboard. “Can’t find any info on it on the Internet. I’m a 35-year-old woman with recurrent ongoing spasming of the eyelid and muscles around the eye interfering with vision. Please help!”

With that message, Peterson joined the thousands if not millions of people worldwide who use the Internet for medical information and support.

On-line discussion groups give people a new way to exchange information and get answers quicker than calling doctors, reading medical journals or researching in the library. There are support groups for maladies from Alzheimer’s disease to vision problems, from skin rashes to fibromyalgia, a debilitating muscle disease.

Some groups are for doctors only, others for researchers. Most are for a combination of professionals and interested laypeople.

Doctors caution that on-line advice ranges from good to worse-than-useless, and people should evaluate any suggestions with a dose of skepticism.

Still, many say the Internet is a good way to reach lots of people.

“I feel like one of the responsibilities of a physician is to educate,” said ophthalmologist David Granet, director of pediatric ophthalmology at the University of San Diego. He answers questions on the vision discussion group Peterson tapped in to.

“In our offices, we educate one person at a time,” Granet said. “There are millions of people on the Internet who can be educated.”

Kathy Mann Koepke, executive director of the Alzheimer’s Disease Research Center at Washington University in St. Louis, created an Alzheimer’s on-line discussion group about 1-1/2 years ago.

Now, more than 600 people subscribe to the service, which sends messages to participants’ electronic mailboxes. Doctors and researchers discuss experimental treatments, and caregivers support each other.

“A lot of people ask if they can copy information and bring it to their physician,” Koepke said. “To some degree, it is a 24-hour-a-day, 365-days-a-year source of almost instant support and information.”

Peterson’s eye problem is only one of her symptoms. She isn’t sure what she suffers from, but her doctors have ruled out everything but multiple sclerosis. She shows copies of her Internet research to doctors, but said she’s frustrated with their lack of response.

“I don’t feel right,” she said. “When I try to put one foot in front of the other, I look like I’ve had about 10 martinis.”

The problems started about four years ago, just after the birth of her youngest child. The first sign was just a quick balance problem in a store, when it felt like somebody took the floor and turned it into a seesaw.

Now, Peterson said she has trouble walking more than a block and a half. She feels sick, and her hands tremble. Lately, she fumbles with simple things, like starting her car.

Every night, Peterson spends a couple of hours tooling around the Internet at the computer in her family room. She checks out discussion groups on eye problems, on multiple sclerosis and arthritis. She used the Internet to help diagnose a rash her husband suffered over the summer.

She’s asked medical questions for her mother and for some of her friends.

“It’s a good resource,” Peterson said. “It’s just like going to the library to me, only the library’s in your living room. But it should be used with common sense.”

Doctors echo Peterson. Many people tossing out advice on discussion groups aren’t professionals - they just play them on the computer.

“On most of the lists - not all of them - people are pretty careful,” Koepke said. “My list, up front I tell people this is not to be used as a long-distance diagnostic system. This is not to replace your health-care provider.”

About 10 people, including doctors and laypeople, answered Peterson’s question about myokymia. Some of the answers were half-baked. One person asked if Peterson used Nutrasweet. Another suggested a tonic with quinine and a splash of gin.

“Some of the advice, you get what you pay for,” Peterson said. “I mean, it’s free.”

Others were informative. One man told Peterson she might have blepharospasm, another eyespasm condition, rather than myokymia.

Ophthalmologist Granet responded to Peterson’s message, cautioned her against using gin and cautioned others against advising medicine online. He told her to seek out a professional.

“People have got to take what they see on the ‘Net with a grain of salt,” Granet said. “That said, there a lot of valuable information there.” , DataTimes ILLUSTRATION: Color photo

MEMO: This sidebar appeared with the story: FINDING A FORUM Health discussion groups are found on the Internet and commercial on-line services such as America Online and Prodigy. If you have Internet access, here’s how to find some of the forums: The National Cancer Institute - gopher:/ /gopher.nih.gov/11/clin/cancernet General medical discussion - news:sci.med Vision discussion group - news:sci.med.vision Alternative health care: news:misc.health.alternative

Staff writer Kim Barker can be reached by e-mail at kimb@spokesman.com.