by Scott Hounsell | April 22, 2015 2:23 pm
In an story as devastating as it is inspirational, a Minnesota woman is celebrating her new found health and “freedom” after finding that she had been misdiagnosed 30 years ago with a debilitating disease.
“A woman who spent 30 years of her life believing that she suffered from cerebral palsy, only to learn that she had in fact been misdiagnosed and almost all of her symptoms could be cured with just one pill, insists she feels no resentment or anger about her doctor’s life-changing error.
Jean Sharon Abbott, 38, from Plymouth, Minnesota, was told she had spastic diplegia, a form of cerebral palsy, when she was just four-years-old. But after three decades of suffering from muscle spasms, weakness, near immobility, as well as undergoing painful surgical procedures, she learned at the age of 33 that she actually had dopa-responsive dystonia (DRD), a rare, yet treatable, muscle disorder.
‘Honestly, I’ve never had any negative thoughts about what I went through,’ Jean told Daily Mail Online of her misdiagnosis, which saw her confined to a bed for much of her childhood.
While Jean admitted that there ‘plenty of times’ she wished she didn’t have to deal with the physical symptoms associated with condition, including her dependence on others to complete everyday tasks, she noted that she still had a ‘fantastic childhood’ – thanks in large part to the unwavering support of her family and friends.
‘Even though I had challenges, my parents were so good with dealing with my disability and didn’t “baby” me,’ she explained. ‘Also, I had true friendships that I never had to question. All of my life experiences made me who I am today – and I like me.’When Jean was first diagnosed with spastic diplegia, she was considered a textbook case, even though her MRIs and CAT scans didn’t show any typical symptoms of the disorder.
And because her neurologist was considered one of the best in the field, second opinions never yielded any other conclusions.
‘I had been seen by one of the best in the country, if not the world, and my parents even took me to the leading hospital in the US for a second opinion,’ she recalled. ‘They confirmed the spastic diplegia diagnosis and said that my doctor taught all of them.’
Jean said she never questioned her original diagnosis and instead chose to accept her physical struggles and focus on living her life to the best of her ability.
‘I was never one to dwell on my disability or to think about it too much, other than when I was at these doctor appointments,’ she said. ‘I guess I was too busy trying to live a normal life and having fun with my friends and family.’
By the time she was 12-years-old, Jean underwent a ‘very painful’ muscle transfer to prevent her knees from knocking together when she walked.
Although she compared the physical agony to open heart surgery, she said she was glad her parents encouraged her to have the procedure, which helped her a great deal and helped to prevent her from tripping over herself when she walked.
Jean, who said she ‘still can’t get her knees to touch’, noted that she was ‘happy that it was a permanent procedure’, although she would have done it again if needed.
When she was in her late twenties, the mother-of-three had a pump implanted in her body to distribute medicine, but when she ended up over-medicated she visited a specialist who would eventually change her life forever.Jean’s new doctor questioned her original diagnosis and sent her to another neurologist.
Her new neurologist told her she had actually been living with DRD, noting that most of her symptoms would improve or disappear with a daily dose of a medication known as L-Dopa.
The neurologist explained that the symptoms of DRD, including the involuntary muscle contractions and tremors, are often mistaken for cerebral palsy or other disorders.
But Jean ‘couldn’t imagine having anything other than spastic diplegia’ and confessed that she wasn’t even going to fill the prescription until her husband persuaded to her to try it.
‘When I began taking it, I was the biggest skeptic,’ she said. ‘I was expecting no results whatsoever and couldn’t imagine a life any other way.’
Jean was given what she now knows to be her correct diagnosis on Good Friday in 2010 and just two days later, on Easter Sunday, she stood for the first time without assistance.
It soon became clear that the medication was working better than Jean could have ever imagined.
As she got stronger, her husband began working with her to increase her walking distance and fourth months later, they celebrated their 10th wedding anniversary by traveling the 1,200 mile road around Lake Superior – the location of their first honeymoon.
And not only was Jean able to walk to the touristy locations that she previously had to be carried to, she was actually able to complete a 10-mile hike along with her husband.While Jean said that they took their time and had snacks along the way, she was amazed by her physical accomplishment.
‘I was so proud of myself and thought that there are so many people in the world that physically can do stuff like this but choose not to,’ she said. ‘And I began to think of all the places I would love to travel with my family that wouldn’t have been an option before.’
And while Jean realized that there are so many things she wants to try now that she can, she still insists that she doesn’t have any regrets about receiving her diagnosis so late in life.
As someone who believes that everything happens for a reason, she noted that if she hadn’t been diagnosed with cerebral palsy, she probably would have chosen a different college, meaning she never would have met her husband and had three children with him.
‘All I know is, I’ve never been one to live with regrets and I wasn’t about to start that thought process as the result of a new diagnosis,’ Jean explained. ‘Plus, I can do things that I never would have even considered before, so I have no reason to be angry or upset. I’m just so darn happy!’ ”
Jean’s recovery is amazing! The medical age we live in continues to astound me as a little pill can virtually reverse the symptoms that Jean was experiencing. 10 mile hike? I can’t do that and I am supposedly “healthy!”
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