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PostPosted: Sun Jan 11, 2009 12:10 pm 
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Getting to Know You...
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Joined: Sun May 04, 2008 3:00 pm
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Location: Spokane, Washington
This article is rather interesting, disturbing and encouraging.

So much pain and anxiety could be spared if more doctors were direct. It's worth the money, energy and time to seek out MS expert, not a neurologist who may claim to be an expert, as there is a distinction.

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PostPosted: Sun Jan 11, 2009 12:23 pm 
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Location: Lexington, KY
Unfortunately for me, it's not something else...it's MS. This article actually makes me feel more frustrated since there isn't a glimmer of hope that my dx could be wrong and no cure along with no truly accurately proven cause.

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PostPosted: Sun Jan 11, 2009 12:23 pm 
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Despite Olek saying (and the drug manufacturers showing through clinical trials) that MS drugs don’t have debilitating side effects, Audel-Neal has experienced a stark result: Her fatigue is finally gone, her tremors have lessened and the fog in her mind has lifted. All were erased when she stopped taking Copaxone, a popular MS drug she self-injected for those four years.

Now that she’s back to herself again, she doesn’t want to spend another ounce of energy on MS, the incurable disease she used to have.

She’s had to accept a lot in the last few months. Her career as an art instructor is still gone. Her daughter is almost 18, ready to embark on her own path, and her 15-year-old son is now a young man. There’s a baby aspirin in her life every morning, rather than the injections of Copaxone. She’s moved from being an MS patient to a woman who had a stroke, the result of her having Hughes Syndrome, a disorder that causes increased clotting of the blood. It took awhile, but she’s come to terms with all of that. The one thing she hasn’t fully accepted yet is her misdiagnosis.

“Dr. Olek performed blood tests that I had never had,” she says, barely concealing her anger and frustration. “How could three doctors have gotten it this wrong?”


Hey Mis...
Is this article about you? Sounds just like the misdiagnosis of Hughes Syndrome you've been sharing with us. The article is right, it's important to get a thorough diagnosis- with MRI, evoked potential and lumbar puncture. Good advice for al! My husband was positive on all of those and negative on 2 antiphospholipid tests...wish he wasn't!
Check out our thread on CCVI- you may find it interesting.
best,
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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