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Livedo reticularis diagnosis – she knelt next to me with a medical textbook

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Last week was one of those professional patient weeks, with three doctor’s appointments and a lab visit. “Professional patient” is not something I happily say. It started out in 2009 as a tongue in cheek way to make the most of an annoying phenomenon – spending several whole days per month as a health care consumer.

Rheumatology_textbooks_smSo, I finally saw the dermatologist about the non-rash on my leg that has been present for 18 months and seemed permanent for nearly a year now. My GP had wanted the dermatologist to have a look at it since she was concerned that the rheum docs (Dr. Tylenol and partner Dr. Shrug) I’d seen over the past year and a half said they had no idea what it is. She and I both suspected what it was, partly because I’ve had other symptoms of skin vasculitis over the years.

The dermatologist’s physician’s assistant (PA) who usually sees us is out on family leave so we saw another PA. My family has gotten good care there for years. The mom of my usual PA has rheumatoid, so I’ve shared with them about the Rheumatoid Patient Foundation (RPF) and the work I’ve done through RAW.

The PA read my referral; listened to my report about the history with my vascular rash; and examined me. It sounds so simple.

She rubbed over the skin and then looked me in the eye and said, “I know what this is. Let me go get something to show you. I’ll be right back.”

We waited 15 minutes. We never have to wait there because it’s such an efficient office, so we were laughing that perhaps she’d forgotten me.

livedo reticularisThen, she walked back in with a big medical book in her hand, “You have something called livedo reticularis. This can happen with immune diseases. I’d be suspicious that it was from lupus, but with your history, we know it’s related to the rheumatoid.” She knelt down next to me and read to me from the book and answered a few questions. So simple.

Even though this was not my usual care provider, she went on, “I’ll be sending a letter to Dr. GP because we have to be on the same page with this. It’s not something you need to worry too much about now unless it gets worse, but it shows you have uncontrolled disease. We’re concerned because that can lead to damage and severe pain.” (I didn’t say anything, but I wondered why they always assume I don’t have severe pain already…)

She asked, “Don’t you see a rheumatologist? Didn’t she know what this is?”

I told her, “Yes I showed it to her. But she had no idea.”

She got an astonished look on her face and said, “I bet Dr. GP got the same look on her face. Look, we really need to know that you are getting better care than this. Maybe she can help you find a better rheumatologist. You need to…” and she went on a little more. (I didn’t say anything; we’ll solve that problem another day.)

I tried to hide it, but I think I looked more shocked than she did because even though I wasn’t even her regular patient, she was so concerned. That, plus hearing the confirmation of a diagnosis I’d long suspected.

This story answers those who’ve asked me whether I got a final diagnosis on my leg, but it’s more important for the good example of communication. So simple. It reminds me of a great story Dana told the other day on the RPF blog about how her doctor has the heart of a teacher – click here to read.

Note: Female gender is used for all healthcare professionals in this post, to help protect the identity of each.

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Kelly Young. All rights reserved.

This entry was posted on Thursday, May 9th, 2013 at 4:55 am and is filed under RA Education. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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