Posted on 04/25/2015 10:57:55 PM PDT by nickcarraway
Jean Sharon Abbott spent nearly all of her life believing she had an incurable condition that left her feeling "trapped" in her own body -- unaware that many of her symptoms could be easily treated with a pill.
The 38-year-old Minnesota mother of three was diagnosed as a child with spastic diplegia, a form of cerebral palsy, a neurological disorder that appears early in life and permanently disrupts the brain's ability to control movement and balance.
For more than three decades, Abbott says she suffered from debilitating symptoms. "I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body," she wrote on her blog. She underwent "countless doctors visits, medical procedures, unnecessary medications and surgeries."
Despite the physical challenges, she says she was able to "make friends, go away to college, marry and have children," and she notes with pride that she managed "to maintain a positive attitude and be a joyful person throughout this whole ordeal."
But it turns out the diagnosis was wrong. She never had cerebral palsy.
In 2010, a new doctor recognized that her symptoms, which never quite fit with the classic signs of cerebral palsy, were actually caused by something else: a rare but treatable condition called dopa-responsive dystonia.
Similar to cerebral palsy, dopa-responsive dystonia can cause involuntary muscle contractions and tremors. However, unlike cerebral palsy, these symptoms can be virtually eliminated by medication.
The National Institutes of Health says dopa-responsive dystonia -- which affects just one in a million people -- may be frequently misdiagnosed because its symptoms are similar to other, more common movement disorders.
For Abbott, the new diagnosis made a world of difference. Treatment with a drug called L-Dopa largely resolved the symptoms she had struggled with since childhood.
Abbott received the correct diagnosis on Good Friday in 2010, and she told the Daily Mail Online that just two days later, on Easter Sunday, she stood up without assistance for the first time.
She says she still suffers occasional flare-ups, especially when she's under a lot of stress or depleted by a cold or flu, but she exercises to keep her muscles strong and says she's doing "so much better than the 'old days.'"
"Every day I do so many things that weren't possible such as: walking my daughter to the bus stop, cooking dinner, vacuuming, driving the kids to all their after school activities and so much more!" she writes.
Does she hold any bitterness towards the doctors who got it wrong for all those years? Abbot says no. "Honestly, I've never had any negative thoughts about what I went through," she told the Daily Mail.
On her blog, she focuses instead on gratitude. "When I go to bed at night and think about who I was in my past life, I smile because I'm proud of who she was and pleased that she is making the most out of her current life...never taking anything for granted."
She is a study in strength and courage, along with her husband. Still, she may want to sue a little bit. As this woman ages, she will have more ailments, and may find it difficult to obtain adequate medical insurance because of the pre-existing conditions. I know, ObamaCare is not supposed to consider pre-existing cdtns as a barrier, but so much he told us to expect turned out to be a lie, would it really surprise you if this claim was yet one additional lie?
My daughter has another form of dystonia. It’s rare and mimics so many other disorders.
I’m glad they are able to treat her. Good news!
Good news.
I guess the writer of this piece considered it too much trouble to explain how this woman came to be correctly diagnosed eventually....
“In 2010, a new doctor recognized that her symptoms, which never quite fit with the classic signs of cerebral palsy, were actually caused by something else: a rare but treatable condition called dopa-responsive dystonia...”
Thank you. Yes, I did read that part. I guess what I was hoping for was what caused her to visit a new doc and how he arrived at her new diagnosis, e.g., what kind of tests.
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