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It's been a while but have the answers now
I first posted in the New Member Intro, so I thought it would be appropriate to post my results of a very long search for answers. I hope it's okay that I post here. After many frustrations and very little answers, medication changes, and new symptoms, I have found that not only is my back completely toast but I was just recently (5 days ago) diagnosed with Parkinsons disease.
It really makes sense now. All the symptoms I was positive were related to my back, and was so sure that it was CES, I have now learned is part of PD. The diagnosis is not as bad as the not knowing was. At least now I can start somewhere instead of not sure which way to go. Of course my back is still an issue and having both PD and a very serious bad back is a double whammy that I have to be extra careful with.
I will be meeting with a Movement Disorder doc as soon as I can get in to see one in SLC. One step at a time, one second at a time. Love, Hope, & Faith, those are the things I don't leave home without. Will keep you posted.