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Adult Progressive Myoclonic Epilepsy

Epilepsy & Seizures | Last Active: Nov 26, 2020 | Replies (34)

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@mxyzptlk32

My symptoms are light-weight compared to what you are dealing with. I am wondering if you record the doctor sessions you have? I found it very helpful when I went to the Mayo Clinic. When I replayed the recording it amazed me how much I missed in the conversation. I always ask if it will be ok (required by law) and sometimes they ask why. I tell them because you are about to say something I won't understand or perhaps use a word I will have to look up later.

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Replies to "My symptoms are light-weight compared to what you are dealing with. I am wondering if you..."

No I’ve never thought about it but our doctor actually records everything because he has forgotten a few things we’ve said and it helps him to go back when I remind him of any discussion and timeline we’ve had previous because of an incident on his part before but we totally understood since he had just became a new parent as well as working at his clinic then being on call at the hospital all weekend. I also notate everything at home and clinics ( dates, names of any physician ,phone numbers, test, ect...) where our son is concerned and each of us make sure that we have clear communication and understanding before we say goodbye . The clinic sends us email copies of the visit so that helps keep us refreshed just in case we have a lapse in memory. I have to say so far he has been the most thorough with precautions and communication since we met him two years ago. He’s the only doctor we’ve had that regardless of time he has his computer records accessible and calls us personally no matter the day or time should something come up but he’s genuinely concerned and has dealt with some of this in his personal life as well.