When I started this stupid blog, I could have never imagined the reach it would have. I'm pretty sure I've said that before, but whenever I try to use my brain to dredge up old memories, something newer and more useful probably gets jettisoned, so I try to do that as little as possible. While searching the bowels of my memory I may accidentally forget how to take out a spleen or something.
Anyway, when I say "reach", I don't mean geographical reach. At least not this time. I've covered that in my hypocritical various milestone posts. Rather, I mean the impact that it could potentially have in people's lives, beyond trauma, beyond surgery. But Veronica (not her real name™) kindly emailed me and did the work for me.
I found your blog while looking for information on Jahi McMath. I kept reading because I found it interesting and educating. You said you like to get responses, so I am giving you my response.
I am 50-years old and have had pain in my joints since I was 10. Diagnoses ranged from "I don't know" to systemic sclerosis. Every doctor had a different answer. When I was 40 it was discovered that I have celiac disease. That made my doctor at the time start looking hard at my immune panel.
I was sent to a rheumatologist who kept testing me for lupus. I don't have lupus. Whenever I questioned a new symptom, he would wave his hand and say it was nothing. Swollen joint? It's nothing. Scaly patches on my leg? It's nothing. Scaly patches on my forehead? It's nothing. After reading your blog, I went to my primary care physician and requested a referral to a different rheumatologist.
I saw the new doctor. She read the entire new patient form and paid special attention to the list of diagnoses and how long I had been complaining of pain. She *looked* at the swollen joints, all of the scaly patches, and even the severe dandruff. She said she suspects psoriatic arthritis, and sent me to a dermatologist.
The dermatologist looked at my skin, took a sample for biopsy, and reassured me that the patches looked nothing like cancer. The tests he did all came back negative, reinforcing his belief that I have psoriatic patches, which he expects to see on patients with psoriatic arthritis.
I know that psoriatic arthritis is a painful condition. I have had pain for 40 years. I know that the pain will only get worse, that it cannot be stopped. I am fine with that. Medicine cannot cure everything yet. I am disgusted that it took so long for someone to *listen* to me and *look* at me. My medical history told the new doctor what was wrong. Now she knows what treatment needs to be done.
I would still be with the original rheumatologist if I had not read your blog. If I had not read your words about doctors listening to patients, I would not have requested transfer to a different doctor. Thank you for that.
To add to all of that, I have complained about severe pain, numbness, and immobility in my right shoulder for 19 years. 6 doctors in 3 states have seen me for it. I have had physical therapy, drugs, and even told it was all in my head. As it turns out, the rotator cuff requires surgery to be repaired. The new rheumatologist is the only one that ordered tests to actually see what is happening in the joint. It could have been fixed 19 years ago, but doctors just didn't look or listen.
Thank you for posting your blog.While I would never be so arrogant to claim that she's better because of me, I . . . actually, you know what, goddammit yes I will. For once, I will take credit. Ok ok, maybe Veronica is not actually better, but at least she now has a diagnosis. And that's something, right?
What surprises me most about this is that Veronica's first doctor thought it was lupus. He should have known that it's never lupus.