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7 thoughts on “Life of a Professional Patient,Blog 6: Full Body Bone Scan

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  • February 18, 2011 at 1:24 pm
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    Did this article suddenly end or did I miss something?

  • February 18, 2011 at 8:25 pm
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    Kelly, I hope they “see” something on your scan, and am very interested to know how well things are imagaged.
    Monday, I had a MRI with and without contrast. What an experience! My doctor had ordered hand xrays and MRI to see in my worst pain joint, if I had erosions or inflammation that could be seen with these imaging techniques. I have been on Remicade since August, and this last course of treatment, I had to increase my prednisone just to continue working. I have been waking up to pain, not just in pain. I think the doctor wanted to use it as a tool to see if to continue on to another med or not.
    Well, the MRI is an experience for sure. That particular scan is brutal. My hands were taped together in a prayer position. I had to lay on my stomach with my arms outstretched like superman flying. My hands were placed in a tubelike holder and I had to face down, for about an hour be still and not move at all. they injected contrast which for me made me very nauseated for a couple of days. When I attempted to get up, my arms were so numb, I couldn’t support myself to swing off the table. Boy, I felt lame!
    I got the call from my rheumy the next day saying that there was a lot of inflammation and that I would be going on a new biologic. I would be keeping my follow up appointment (in three months!) I was so tired from the imaging and infusion etc. I didn’t quite get that, what in the world am I supposed to do in the interim! Flare and flare! I’m going to get a copy of my radiology report to see what exactly the radiologist saw. And call my rheumy to make a plan on what my care is going to be exactly.
    I feel like a burdon with all these continued changes with him, and feel like, if I make one more call I’m going to be black listed. I really don’t know what my next biologic will be, Enbrel, then Remicade. What comes next?
    thanks for listening. I hope that your treatment has at least stopped the progression of your joint destruction – hopefully! and that you will get answers.
    Take care.

  • February 20, 2011 at 10:07 am
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    Hi Kelly
    Wow – I’m so pleased that it sounds like you have something visual to show the ‘doubters’ and maybe not just the medical ones either.
    I’m hoping that you aren’t suffering more than usual following this scan. Sometimes even though you know you aren’t ok, finally seeing it literally with your own eyes can really bring it home to you – and not always the way you expect.
    It’s so time for you to get some respite.
    Take care and be gentle with yourself.

    Kath (signing in from my phone and forgetting my password 🙂

  • February 21, 2011 at 10:53 am
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    Lacie,

    What you likely missed (because it took thinking beyond what was written) was that this test confirmed what Kelly had known all along (but many others doubted)–that there was inflammation present throughout her body. Also, because there are some who feel that patients should not be looking at their own scans, Kelly points out that our determination to learn all we can about our disease and the tools used in diagnosis and treatment is an important part of fighting it.

    Hope that helps…

  • August 7, 2014 at 8:07 pm
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    I would love to know if you felt this scan was true or hype. I just went to my first rheumy apt and he ordered this and a bunch of x-rays and blood work. Is the scan worth it? Do you think it was best to go in without any meds? I have blood tests Monday morning and the scan and x-rays on Tuesday. Right now I’m taking 1000mg of Aleve every day. Would it be best to stop taking them this weekend? Now? Curious.

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