Wheaton woman's health troubles documented on 'Mystery Diagnosis'
Cindy Webber wasn't concerned when she noticed a recurring nasty purple bruise on her thigh. Her doctor told her to stop jogging.
The Wheaton kindergarten teacher also wasn't worried when she began developing rashes all over her body. Allergies, her doctors thought.
Webber started to panic, though, when she started feeling numbness and tingling in her limbs, recurring fevers, blurry vision, then waves of extreme pain - like someone was setting her on fire.
"I was really frightened," she said. "I said, 'Am I going to die?' They said, 'We don't know what you have.'"
Discovery Health will highlight Webber's odyssey at 9 p.m. Monday, Dec. 7 on its TV series, "Mystery Diagnosis," which highlights struggles to identify rare and dangerous diseases.
Stumped
For more than a year, doctors were at a loss to explain Webber's condition.
It started with fairly innocuous symptoms that simmered before reaching a raging boil.
When she first noticed the bruise in 2004, Webber was an active 44-year-old married mother of two, working full time, who ran three to five miles almost every day.
By summer of the next year, she could not even stand. Her feet and hands went totally asleep except for waves of pain, her ears clogged up, she couldn't sleep, and her feet were so swollen she could not wear shoes.
"That's when all the doctors became very concerned," she said. "They knew something was very awry, and something needed to be done very quickly."
A couple of MRIs showed nothing unusual. A series of other tests, including an angiogram and analysis of more than 50 vials of blood in a month, was inconclusive.
Weber saw 13 doctors, including a rheumatologist, a neurologist, ophthalmologist, dermatologist and general practitioner.
Doctors speculated she had rheumatoid arthritis, lupus, other types of vasculitis, Lyme disease, strep or even cancer.
"They were looking at everything," Webber said, "and nothing was enough of a fit."
Finally, a clue
It was only when Webber went for a routine exam by her gynecologist that something turned up. Tests found blood and protein in her urine, red flags that her kidneys were malfunctioning, which had previously been ruled out by a normal finding in a creatinine test.
A biopsy of her kidneys finally found the cause: microscopic polyangiitis, or MPA, an extremely rare type of vasculitis. It's an autoimmune malfunction in which white blood cells attack blood vessel walls, causing severe inflammation.
It's estimated to occur in only one to three in 100,000 people and can damage the kidneys, lungs, sinuses, nerves and skin. The disease has no cure, and can lead to death. It often strikes middle-aged white men, but can occur in anyone.
Dr. Martin Kittaka immediately put Webber on a treatment of immunosuppressant steroids and chemotherapy.
Rapid rebound
"The amazing thing is," Webber said, "the treatment can literally bring you back to life."
Within 24 hours, she felt markedly better. It took longer to recover from nerve damage, but steadily, she was getting back to normal.
Webber was fortunate. Some people don't respond to treatment or have severe side effects or relapses. Her disease went into remission, and she is now off treatment, back to full strength and working full-time.
She hopes to start running again this year and possibly run the Cream of Wheaton 10k.
She also takes part in MPA support groups, spreading awareness about the disease, and in walks to raise money for the Vasculitis Foundation.
An earlier diagnosis would have been great, but Webber understands that MPA is so rare that it remained under the radar, and the tests just miss-timed catching fluctuations in her condition.
"I don't want to point fingers at any doctors," she said. "I just want to move forward."
And she offers advice for others with undiagnosed conditions.
"Be your own advocate, and keep pushing on your own behalf," she said. "Keep seeing doctors, because you'll probably find one that can figure out what's going on with you. Have hope."