Referrals to new doctors are nerve-wracking.
I’d considered various scenarios, and thought I was ready for anything, however, I hadn’t expected the nurse who roomed me to ask, “When were you first diagnosed with psoriasis?”
Puzzled, I looked at her and said, “I’ve never been diagnosed with psoriasis. My doctor said this rash might be psoriasis, but he wasn’t sure.”
The nurse raised her eyebrows and eyed me like I was clueless. Then she showed me the charge slip that the doctor would complete and pointed out the lone word “psoriasis” on the “reason for visit” line. In my book, that only means that the person who scheduled the appointment made a mistake. Words like “possible” and “suspected” would easily have fit in the allotted space, but were omitted. Since I’m not the one who did the data entry, I can hardly be blamed for the error. And, while I suspect that I might have psoriasis, there are a few pretty good arguments against it. That’s why a doctor does the diagnosing instead of the patient.
Not a good start to the appointment, but not the end of the world. When the doctor came in, I was surprised to discover that he’d already looked at my paperwork. I was slightly off-balance from the nurse thinking I had a definite diagnosis. For some reason, I thought the referral was straightforward, so didn’t anticipate the doctor asking, “What can I do for you today?”
A few options rushed through my head:
- doesn’t the referral form say what you’re supposed to do?
- I’d love to have you tell me that I don’t have discoid lupus
- tell me that this isn’t scleroderma, either
- convince me that I definitely don’t have psoriasis, which means I don’t have PsA, which means my daughter doesn’t have PsA
Not knowing anything about this dermatologist, I silently repeated my new-doctor mantra: “Don’t come on too strong; start off slowly; build trust,” and finally asked, “Can you help me get rid of this rash?”
How frustrating that patients aren’t supposed to have any ideas. What a waste of time that so many doctors find it annoying for patients to have done any research. I’d have loved to say, “These weird coin-shaped things all over my body are driving me crazy, and whatever is going on with my scalp is driving my husband crazy (because I keep scratching them). I don’t think I have discoid lupus, because even though the shape and size are right, the location is wrong. Despite Raynauds and peripheral neuropathy, I don’t think it’s scleroderma because my SCL-70 antibodies were low last time that test was run. Whatever these coin-shaped things are, I think there’s something else going on too, because I also had a different rash that looked exactly like photos I’ve seen of inverse psoriasis (but it disappeared with one application of the steroid cream, so you can’t see it). Is it possible to have psoriasis with no scales anywhere, and also have this completely unrelated rash, too?” But apparently patients who do online research are annoying, so I kept all those thoughts to myself.
After looking at this odd rash, the doctor declared that it’s not psoriasis. Neither is the stuff on my scalp. He looked a little puzzled, and said, “It looks like nummular dermatitis.”
Who Gets Nummular Dermatitis?
This skin problem is more common in men than in women. Men tend to have their first outbreak between 55 and 65 years of age. Women are more likely to get it between the ages of 15 and 25 years.
Ah, now I know why he looked puzzled. Time to do some research, make a list of questions, and hope it doesn’t annoy this new doctor that I want to understand what’s going on. My first question will be, why do I have something that’s not common in my age group or gender?
I now have a topical steroid cream, steroid ointment, steroid solution, and am desperately feeling the need for another cortisone injection in my shoulder. I think I’d rather just go back on prednisone – which, in addition to making my joints feel better, should clear up this rash. Unfortunately, I think I need to know this doctor a lot longer before I can just ask if pred is an option. I sincerely hope that I never again need another new doctor.
∞ itis 
Oh, dear. I feel your frustration. I, on the other hand, tend to bombard my doctors with information — particularly if they’re a referral so they know everything I know. (It’s no doubt a good thing that I don’t have a lot of new doctors if they do get taken aback by patients like me.) As the patient, you’re the focus of all the tests, treatments, diagnoses, etc., so you’re (unfortunately) the best person to educate the new guy. But you’ve proven time and time the ability to find a good working relationship with your doctors, so I have great faith that this will also be the case. I hope something brings you relief quickly!
Thanks, Carla. The more I’ve learned about my diagnosis, the better I’m feeling about how that appointment went. I have a follow-up three weeks from my first appointment, so if the rash isn’t looking tons better by then, I’ll broach the subject of a short course of oral prednisone. Hope you are recovering well.
And we keep on trying… It is a catch 22. Sometimes I wish I didn’t know so much, but then again advocating for ourselves is indeed the right approach 9 times out of 10/without our input I don’t think our care would become so personalized and thorough. But I feel your pain, I have my own drama going on right now again and was hoping I could enjoy the summer without a hitch. Not to be, dentists, doctors, and cardiologists are in my long term summer fun.
😦 Oh, no! Healthy people don’t realize how good they have it. I hope all those doctors are able to quickly find an effective treatment for you.