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Moving On Up In The World [Mayo 3]

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best juno quote everDay one of my Mayo adventure was most useful. I got to the Mayo at 6:30 am and was on standby until 12:45, during this time I tried to prioritize what to tell this doctor, there was just so much to say. They called me back and I began to worry as I waited for the doctor to come and examine me. What if he thought I was a liar? What if he couldn’t help me? As my worry turned to panic there was a knock at the door. In came a very tall very confident looking man with very kind eyes. He asked me what was ging on and I exploded. I told him all about my fatigue, rheumatoid arthritis, occipital neuralgia, GI problems, migraines, TB, every little thing. He seemed rather taken-a-back by the wave of information coming at him. He briefly looked at my 3 inch binder of medical records and said they weren’t of any use. He did a complete physical exam and asked me some questions that no other doctor had asked like “does your shoulder sort of pop out of place at random?” YES. “are you always tired for no reason?” YES. “Do you wake often even though you’re exhausted” HELL YES. He then told me that he thought I had fibromyalgia [which I’ve suspected for a while]. He said I was so consistent with a typical Fibro patient that he was shocked that I hadn’t been diagnosed.  He asked what my rheumatologist said when I brought it up, upon hearing that I raised the issue before and had been sent home with a Vicodin RX with the instruction of just rest more he was appalled. I asked what he suggested I do when I get back to Dallas and he almost yelled “FIND A NEW DOCTOR!”. He started me on Lyrica [which I will have my first dose of tonight] which will “either make things much better or much worse”.  He wants to ensure that my RA is well controlled and has ordered a highly detailed joint scan with contrast tomorrow and a serious of in depth MRI’s on Friday. Monday I will be going to see a pain specialist at St. Mary’s [associated with the Mayo] on Monday, there they will evaluate my potential treatment options for the long term. So while today was long, it was productive. I will continue to update as things progress.

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3 responses »

  1. Jo Schneider

    I’m fascinated to readabout your day. It does sound productive, certainly. To hear of getting a long term careplan sounds great. More to come, obviously.So far, good attention to what you say, apparently. Your Mayo experience has started with a bang, kind of? What do you think you’ll do Saturday and Sunday?

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    Reply
  2. 3″ binder of medical records!…have you looked at any tools to help you create a personal health record so that you can keep all your data in digital format and more accessible? I am in healthcare IT and just learned about some great new online tools! Just curious if you have considered using them or if you even knew they existed?

    As an IT professional and recently diagnosed RA patient…I’m curious what IT others are using or if they are using any medical apps or tools.

    Reply

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