October 26, 2013
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After 3 days of appointments and tests, mom and I are heading home. We are still awaiting some test results. She had one of the most thorough neurological exams yesterday I've ever seen (and I've seen a bunch of these in the past 5 months!). The neurologist does not have a diagnosis for her at this time. She does have myoclonus but he said it isn't classic myoclonus, and she has some other abnormal movements as well. He needs her to come off of the medications that were prescribed for the jerking and movements over the past few months and then she will need to come back to Mayo for follow up. Coming off these medications is going to be a very slow process because of the withdrawal symptoms that can occur. Mom is frightful of stopping these meds because she's afraid the jerking will be worse. So in a nutshell, we are starting over. New doctors, new plan, etc., BUT I feel it will be worth it in the end. She has a team of doctors at Mayo who are working together and are going to see her through this. The neurologist said he does feel like he can get her better and that is what's important. Thank you for all the comments, texts, calls, and prayers! A special thanks to my closest friends who have been in constant contact with me throughout this trip--you have lifted me up so many times!
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