Life of a Professional Patient,Blog 6: Full Body Bone Scan

It’s been a little while since I wrote a professional patient entry. It started out as just sarcasm. It turned out to be kind of a journal of my “progress” in the fight. I think I write one when there is a kind of milestone. You can find the links to the other professional patient posts below.

Finally, my full body bone scan

This week, I finally got the bone scan I’d been thinking about for about a year and a half. If you read Nuclear Bone Scans for Rheumatoid Arthritis or Scintigraphy two weeks ago, you’ll see why my doctor had discouraged me from getting the test. Then, in another recent post, I described how doc finally ordered the full body bone scan thanks to a new patient email system.

So the day came. First part of my plan: abstain from any medications in case they would suppress inflammation, altering the test results. I showed up at the hospital in the morning and reported to the nuclear medicine technicians. One woman asked several times which joint bothered me. She did not like it when I finally said, “Every joint is painful, stiff, and weak. Including the ones here and here that I need to breathe or eat.” The “H” word was not spoken, but I hope she didn’t doubt me as she wrote that I claim to have pain in every joint.

The other technician was a little more curious. Turns out his wife has a mild case of untreated Rheumatoid Arthritis. We had a good conversation and I gave him my business card with my phone number. Then he injected me with the Technetium-99m. I left to begin the second part of my plan: spend the next few hours moving the same way that I did during labor, no matter much I wanted to lie down. I also had to drink a lot of water to flush the radioactivity out of soft tissues.

During the scan, I asked a lot of questions, trying to learn as much as possible. I hope to read the radiologist’s report soon. Then, I’ll probably go through a third round of research and let you know what I learn.

Sneaking a peek at the full body bone scan

However, I have sneaked a peek. As a professional patient, I knew that the full body bone scan results belong to me. So I asked very politely whether they would give me a disc of the images that I could hand carry for any needed second opinions.

By the time I got home, I could not move at all and dozens of joints hurt. That happens whenever I go out. My kids gave me sympathy and medications and hot tea.

Lying on my sofa, I was determined to read the images from the scan. It took about six hours, but I finally saw my images. We all know I’m not a radiologist of course. However, I sent one image to another patient who just had the same scan. The other patient was trying to help me view the scan images with the right kind of program. Here’s what the other patient messaged me: “I bet your wrists hurt.” Wow, the one I had sent must have been of my hands! Soon, I saw my other joints which looked a lot like my wrists. True, we’re “just” patients, but being determined to learn has to count for something.

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Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

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?

    Reply
  • 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.

    Reply
  • 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 🙂

    Reply
  • 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…

    Reply
  • 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.

    Reply

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