Tardy multiple sclerosis diagnosis troubling
Joy Bargerstock knew something was wrong when she woke up one morning and the fingertips of her left hand were numb.
She shook them. They felt rubbery. They had been normal before she went to bed.
“What's going on?” Bargerstock, 49, of Harrison asked herself.
The sudden numbness she experienced two years ago led to a diagnosis she had feared for years: multiple sclerosis, the crippling illness that had afflicted her mother. The disease, which eats away the protective sheath covering nerves, turned Bargerstock's once active life upside down.
She quit her job as a medical transcriptionist. She finds it difficult to climb stairs or walk her dog, Kelsey. She gets monthly intravenous infusions of Tysabri, a new drug that will not cure her but promises to slow its progress and make the MS more manageable.
This unpredictable illness affects about 2.5 million people worldwide. That's merely an estimate because MS is not a reportable illness and there is no national registry to track the number of people who have it.
Bargerstock fears the drug eventually will cause side effects, as its manufacturer warns, or that her condition will progress and worsen. Her worries stem from the fact that her former family doctor misdiagnosed her when she first showed up at her office.
That's pretty troubling, considering medical experts increasingly believe that early and aggressive treatment can prevent brain neurons from dying and perhaps prevent progression of MS.
In her case, Bargerstock had fallen and sprained an ankle in early 2010. She thought she'd broken the ankle, but X-rays showed no fracture. She went to physical therapy, but her ankle remained weak. She started feeling continuously rundown.
MS always worried her because of what had happened with her mother. Perhaps because of denial, however, she didn't want to think about it. Then her fingers went numb.
Her doctor ordered exercises and acupuncture, telling her that an electronystagmogram (ENG) test found no problems in her brain. The doctor attributed Bargerstock's symptoms to a rare condition, thoracic outlet syndrome, and dismissed her request to undergo an MRI, the imaging tool most often used to diagnose MS.
A frustrated Bargerstock reached out to a neighbor who is a physical therapist. He doubted the thoracic outlet syndrome diagnosis and tested her knee reflex. When he tapped her knee with a kitchen knife, her leg jerked straight up. Because overactive reflexes can be a sign of MS, the neighbor called Bargerstock's doctor. Within two days, she got an MRI that led to an MS diagnosis.
“My mouth dropped,” Bargerstock said. “My husband and I just sat there speechless.”
She was angry. She said she'd known something was wrong, and her doctor dismissed the possibility of MS, an illness that eventually can rob a person of eyesight and bladder control.
Bargerstock one day could wake up with blurred vision. She could become a quadriplegic, like her mother before she died 18 years ago. Only time will tell.
One thing she knows for sure: “I don't want anyone to suffer through what I went through. The misdiagnoses have to stop.”
Luis Fábregas is a staff writer for Trib Total Media. He can be reached at 412-320-7998 or firstname.lastname@example.org.