What the Doctors Really Do Know…

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A couple weeks ago, I posted a blog note that wondered, What do doctors really know? This article discussed some of my frustrations with visiting doctors and not getting any answers. Well, tonight’s blog post is dedicated to what the docs really do know… the diagnosis.

As a recap, I’ve been dealing with some severe stabbing pain on the right side of my tailbone. This is coupled with back pain, knee and hip pain, ankle pain, you name it- I seem to have felt it over the past few months. I have been on a few medications and a short course of prednisone seemed to be the most successful so far. My Rheumatologist requested that I get some xrays, MRIs, and bloodwork done to get the full idea of what’s going on. Yesterday, I had a series of MRIs completed both with and without contrast. These consisted of regular MRI scans first; for those of you who haven’t been in an MRI tube before, you basically lie down on a flat hard table or bed and if you are getting pictures of your pelvis taken, they strap a foam-like pelvis on top of your pelvis and then place sheets between your legs so that you don’t get burned. They put headphones on you and will play any radio station at your request (it’s very loud). They then push you into the tube… the top of it is about 4 inches from your face- no wonder folks who are claustrophobic don’t react well to it! For some reason, when I had an MRI in 3rd grade it seemed a lot bigger :0). So the machine does its thing, you get really overheated and the technicians work to keep you as comfortable as possible.

Once those are done, they do a contrast. Basically they put in a needle and draw blood to test it for a Creatinine level; if you have the wrong level, they won’t inject you with the dye. Once they take blood, they rinse with saline solution (really strange because you taste it in your mouth). Next they inject the dye; it’s tingling and cold. It runs its course through your veins and you get a super dry mouth. They instruct you to drink a lot of extra fluids over the proceeding 48 hours to flush the dye out of your system. Once the dye is injected and runs its course, they put you back into the MRI machine and take more photos. I had this done twice; once for my pelvis MRI and once for my lower lumbar/spine.

My follow up appointment with my rheumatologist is scheduled for next week; you can imagine my surprise when this morning, I received a call from him at work.

He said “Meghan, I got your MRI results and I wanted to tell you some findings. Your blood tested positive for the HLA-B27 gene. In addition, your xrays and MRIs show conclusive results that you have ankylosing spondylitis.”

Me: “Ok.”

Him: “Do you know what that is?”

Me: “No.”

Him: “It’s an auto-immune disease that is more commonly known as arthritis of your spine and lower back. It can affect your other joints and organs as well, there is no cure for it, but we will work to manage the pain and help you live as normal a life as possible. How did the prednisone work?”

Me: “Oh, ok. It seemed to work well,”

Him: “That’s good. We will talk more about this next week in depth but I wanted to let you know the findings.”

Me: “Ok. Thanks for letting me know.”

Him: “You’re welcome, I’ll talk to you next week and let me know if you have any issues between now and then.”

Me: “Ok. Thanks again.”

And just like that, I found out what the doctors really do know… that I have an auto-immune disease called ankylosing spondylitis.

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7 responses »

  1. Just wanted to say that I have been thinking about you a lot. If there’s anything at all that I can do to help please don’t hesitate to let me know – it wasn’t that long ago that I was in your shoes. Many much loves!

    • Thanks, Mariah :0) I really appreciate it! I will most likely be calling/bugging/texting you in the near and not so near future. Hopefully I get a lot of good information from my doctor next week… and some good meds? Hope you are doing well!

  2. Thinking about you this morning. As you begin this new journey, don’t forget to keep your eyes on what makes you happy.

  3. Pingback: Ankylosing Spondylitis « aklasiccommotion

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