Confusion

Do you review your notes from past doctor’s appointments?  I do.  Recently I scanned through old notes – both from my doctors and my daughter’s appointments these past six months.

Thinking back, when I was first given my lab results and a referral to a rheumatologist, I started reading about the ANA lab test and the implications of positive results.  I read about RA and SLE.  Neither sounded like a perfect match for my symptoms, but (despite being unable to give a concrete reason) I thought SLE was closer.

At my initial appointment with the rheumatologist, it wasn’t clear-cut to him, either.  He said things like probable early RA, rhupus, mixed connective tissue disease, and atypical presentation.  RF was negative, so to my relief, my PCP interpreted that to mean “not RA.”  Only when my CCP came back with a strong positive a few months later, did I get a definitive RA diagnosis. 

Credit

It was nice to have a label instead of uncertainty, but I’ll tell you a secret:  I never bought into the RA diagnosis 100%.  Since denial is supposedly a common reaction to such a diagnosis, I tried to squash that hesitation and look at the fact that the test for cyclic citrullinated peptide antibodies is a pretty accurate test (both sensitive and specific) for RA – much better than the test for rheumatoid factor.  If the lab report says I have it, then I must have it.  BUT… there has always been that niggling little feeling that things don’t quite add up.

Recently (last week?) I read an article that got me thinking even more (but can’t find it now to provide a link).  The line that jumped out at me was something akin to, “If the symptoms don’t seem to match, maybe you’re reading from the wrong page in your book.” 

This is what led me to review my old notes.  A few months ago, my rheumy said we’re going to stick with the RA dx, but mentioned undifferentiated spondyloarthropathy as a possibility.  I started net-surfing, reading about other autoimmune diseases instead of just RA/SLE/MCTD, and found some startling information.  I think the symptoms have differentiated themselves; I think I have PsA. 

70% of people with PsA have psoriasis first, and the arthritis comes later.  15% of people are diagnosed with both psoriasis and PsA at the same time.  There’s another 15%, though, who present with arthritis symptoms first, and only later do skin symptoms emerge; it’s very easy for PsA to look like RA.

Don’t laugh.  Okay, laugh if you wish.  I know I don’t have any medical training, and that my rheumatologist is an expert in figuring these things out.  But with the spinal involvement and my response to the withdrawal/return of ssz, I don’t think she’s entirely convinced that this is RA.  There’s a LOT of overlap in how these two types of arthritis are treated, so sometimes the right label doesn’t even matter.

I might have RA, too; it’s rare, but possible, for a person to have both RA and PsA (and kind of hard to dispute that strong-positive CCP).  We’ll see.  As it happens, I’m seeing two of my doctors tomorrow.  I’m a bit nervous about what they’ll say, and the possible implications.

Rather than footnotes, I’ve added PsA links to my sidebar.  They’re right beneath the RA resources.

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.