10/25/13
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Just giving a quick update. It's been a very, very stressful day. The neurology appt was overwhelming. There's no diagnosis from neurologist. He only diagnoses when he's 95% sure. He needs to see her movements without all the strong meds so the plan is to wean her off the meds which is going to take 2-3 months. He will be monitoring her progress with our Tusc neurologist. We will be coming back to mayo in the next couple of months. Chest ct was ordered because of something that showed up on chest x ray. The chest ct was done by 3:30 today so we haven't heard results. I will try to send a more detailed email later but like I said it's been a very stressful day.
Well, I guess that was pretty darn detailed. Anyway, I will add one more thing the neurologist asked to video her movements and we agreed. I think she's blown his mind as well as every other neurologist BUT he's willing to monitor her and see us through to get her better. That's the Mayo difference.
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