CHARLOTTE, N.C. - Mandy Campbell started to feel sick in 2007. She says her speech was slurred and she was starting to write "funny."
So Campbell went to the doctor. After some tests, he determined she had MS.
"It's kind of the death of your old life," she told Action 9. "Am I going to be in a wheelchair? You know, what does that mean? I'm 26 years old at the time. You know, what does that mean for work? For your life? About to get married. Are you going to have kids?"
Campbell started on the medicine Betaseron.
"It's a shot. So you do that every other day. In your arms, the back of your arms, your stomach, your legs, and your butt." She says she did that for 11 years.
Then, in December 2017, she started getting fever and chills every day around 3 o'clock. One thing led to another. Campbell ended up at a different doctor "and within five minutes, he said, 'You don't have MS.'"
She was thrilled to hear that. But she didn't know he was right until she stopped taking the shots and all of these months passed.
"I feel like a normal human being again," she said, but "11 years of your life. So much could have been. You just don't know."
She still doesn't know what illness she had that started all of this. But once you get MS, you don't lose it. So it's not like those medicines cured her. It looks like she just never had it to begin with.
A major hospital, Cedars-Sinai Medical Center, study recently found "nearly 18 percent of patients diagnosed with multiple sclerosis had been misdiagnosed."
The researchers said some doctor confuse a "stroke," "migraines," or even "vitamin b12 deficiency" for MS. They said, "The diagnosis of MS is tricky" and said it is "not a perfect science."
Dr. Allen Desena is a neurologist at Atrium Health. He was not Campbell's doctor, but he specializes in MS and agrees the disease can be very difficult to diagnose.
"I think the challenge is that it's a, technically is a diagnosis of exclusion," he told Action 9. "There is no definitive yes-no test, that if it's positive, it means you definitely have MS, if it's negative, it means you definitely do not."
He and other experts say, yes, it's great to find out you don't have MS, but, if your doctor thinks you do and is wrong, you can lose time treating whatever you really do have. Plus, you could take ms medicines unnecessarily, meds that impact your immune system.
"The main concern is the immuno-suppression so there is a little bit increased risk for everyday, run-of-the-mill infections," he said.
If you can, see a neurologist who specializes in MS. Most insurance should cover it. And don't be afraid to get a second opinion. In fact, in a situation like this, Action 9 highly recommends a second opinion.
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