Well, I'm Back....

So, I've had a rough couple of months. I won't go into all the crap that has surfaced (because it IS crap, and no one should should be made to smell, see, or step in crap if it can possibly be avoided. I mean, think of all those intricate patterns on the bottoms of our sneakers....).

I will, however, detail an aggravating RA-related issue that finally was resolved as of yesterday.

When last I saw my RD, a few weeks ago (for general and post-surgical follow-up), I had complained of more pain than usual. Consequently, she wanted me to have an ultrasound done at the great-and-highly-vaunted Northwestern Memorial Hospital here in Chi-town to determine how well the Enbrel was working. My RD frequently sends patients to Northwestern for US's, since "they're the best and they know what they're doing.")

(Side note: I'd been off the Enbrel for the surgery, and it was possible that I still hadn't reached a therapeutic level.)

Now, it's important to remember: I've had two other US's done previously. The first revealed inflammation; the second, inflammation and erosions. However, they were read by a group out in CA with whom my RD isn't familiar.

Anyway, I went to GHV-NMH (that's "Great-and-Highly-Vaunted Northwestern Memorial Hospital) and had the US done. The radiologist said, "I'm not seeing any evidence of RA. No inflammation, and any erosions are osteoarthritic." 

"So do I have RA?" I asked.

"I couldn't tell you that," he said. "You'll have to talk with your rheumatologist."

"Well, fuck me sideways," I thought. "Maybe I don't have RA?!?! I mean, since I've always been seronegative, I've always had this nagging doubt about the diagnosis anyway. Of course, even if I don't have it, I'll have to figure out what in hell I DO have...."

I was seriously perturbed.

When I got home, I called my RD. "I don't understand," she said. "Even if you had no inflammation, the erosions should still be there and visible on the US. Erosions never go away."

Subsequently, I managed to track down the actual films of the last Non-GHV-NMH US (wow, is that an acronym, or what?) and sent them to my RD, who sent them along to GHV-NMH radiology to ask them to do a comparison between those films and their films.

By the time I arrived at my RD's office, she still hadn't heard anything from GHV-NMH about film comparisons. She had, however, received the US report, which stated "Completely normal US."

We did some brainstorming and went to review some of my xrays. She saw what she thought was bone-thinning in my feet, and thinning and erosions in my hands. But she wanted to check it out with their radiologist -- if he was on duty.

She returned several minutes later.

"He confirms what I saw. So, you do have RA."

Subsequently, we talked about my meds and our respective poor attempts at dieting (sigh).

I'm continuing on the Enbrel since it seems to be keeping the inflammation at bay. But I'll still have bad days, when the pain and inflammation are present. And I'll always have the erosions, which can be painful no matter what.

So I guess this is as good as it's gonna get.

And I'm okay with that.

But what about GHV-NMH? Doesn't it suck that an enormously well-respected institution can screw up so badly that they can't see on a more-sensitive US results that are evident on xrays?

"What are you going to do about that?" I asked my RD.

"I don't know. I guess I'll have to wait to see how they respond to my request for a comparison."

Comments

[Wren]

I've read somewhere that ultra-sounds for RA are tricky and rather hard to read, as they work better for soft tissue than bones. That might be why the results were so screwy. Anyway, sorry to hear you're coping with increased pain these days. I hope it eases off soon.
-Wren

[WarmSocks]

Glad you're back. Sorry it's been rough.
It will be interesting to hear what the comparison request shows.