Rheum

Preparing for appointments with the doctor is paying off.  It’s good to know what changed since the last appointment.  When I saw my rheumatologist, I was able to say what happened when I skipped my Enbrel (due to the bronchitis), and then what happened when I resumed the med.  Those are things she needed to know.

Given what happened when I missed my Enbrel, she’s wondering if there’s more going on.  We discussed the pro’s and con’s of more testing.  MRIs are expensive (I think my last one was over $3K).  Would it change my treatment plan?  That’s the interesting thing.  Right now, probably not.  In the future, maybe.  As new medications are approved, there might be something that would be more appropriate, and having that answer could be helpful.

If there wouldn’t be a treatment change, then that’s a lot of money just to get answers for a fuzzy someday.  BUT I’m thinking that solid answers for my diagnosis might be helpful in solving the riddle of what’s going on with my daughter.

My doctor is wondering about seronegative ankylosing spondylitis.  I told her that, in truth, from the things I’ve read, it sounds like a really good fit – better than the RA dx.  Since that appointment, though, I’ve been looking back over my notes and the things I wrote early on.  The swollen feet; hot, red, triple-swollen hands; positive CCP – that’s RA.  I haven’t read anything about people having both RA & AS.  If that’s possible, I think that the RA is very well controlled, but the other stuff that’s going on could use a little tweaking.  Answers would be nice.

It’s so nice to have a doctor who I’m comfortable talking with.  She told me, at the end of the appointment, that my being organized makes her job easier.  Being prepared to tell her what’s going on is helpful.  That was good to hear, because sometimes I wonder if preparing for appointments is worth the effort.

The plan right now is that I go in for an MRI later this week.  No doctor’s appointments for me in November!  I’m supposed to see both my rheumatologist and my family physician in December.  My daughter will follow-up with her rheumatologist later in December.  I also plan to do something about my shoulders; I quit doing my shoulder exercises while I was sick, and that turned out to be a huge mistake.  I have less range of motion than I’ve ever had, so need to regain all that I’ve lost.  More about that in another post.

Thank you for reading.  I’m way behind on blog reading right now, but am trying to catch up.

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3 thoughts on “Rheum

  1. I hope the MRI pays for itself by providing you and your rheumatologist with answers, Socks. I hope it provides clues as to your daughter’s condition, as well.

    Thinking of you, as always, and sending warmth and comfort your way.

  2. It sounds like we have some similar stories…AS or RA? Your positive CCP test, coupled with small joint problems steers towards RA. AS tends to hit the large joints and show up in the twenties and then subside. Did you have a HLA-B27 test? That’s one they use for AS. As we discussed in the past, I believe that there are multiple forms of RA.

    MRIs can be wonderful diagnostic tools. But they are soooooo expensive. My co-pay tends to run $500 for one.

    Andrew

  3. I hope you’re able to get some more answers.

    I’ve also wondered if RA is what’s really going on. I was diagnosed so long ago (and before I could tell my doctor what I was feeling). Still, I have so much permanent joint damage that RA seems like the only answer. I’m curious about how the diagnostic process might be different for me today, though.

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