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Beau's Mom

On the importance of seeing a Movement Disorders Specialisy

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Good point.  I remember assuming it was nerves in my back and neck and seeing orthopedists trying to fix my back problems.  My back did hurt a lot, but it was not for the reasons I thought.   When things got even worse, I went looking at the online tools.  I am sure PD was on the list, but I remember thinking MS was a possibility.  I must have ignored PD or the online tool did (because of my age).   I didn't like neurologists at the time because I had a neurosurgeon do back surgery to relieve a bulging disc.  He ended up leaving me for two weeks with a spinal fluid leak. Nobody should ever have to feel CSF dripping down their back or be able to touch it!

 

I had to go to neurologists, but one said I was "too young" to have these problems and one said I was good because my MRI was clear (ok, but I am still not doing better).  I may have had an unnecessary fusion on my neck.  When my problems didn't improve, I went on a downward spiral and I eventually could barely walk.  Then, the revelation came from a very sharp neurologist who had better education and experience because we were now being treated in a major city thanks to recent move. It was obvious, he said.  That day was the first I heard of an MDS.  He knew to point me directly to the best MDS group in the area.  Now it makes sense, I had (still have) a movement disorder why not see a Movement Disorder Specialist?  It seems so simple, but the thought never occurred.  I am SO grateful to have an MDS.  She notices things I don't and knows how to deal with the issues.  She makes my wife happy too; which is great.  Similar to that article, we struggled for answers and received constant misdiagnosis and medical expense increases.  To have someone with answers is miraculous to us.

Edited by MurrayPD2
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