Questioning your diagnosis?

By debbie71016

1 min read

I was diagnosed with psoriatic arthritis and ankylosing spondylitis over 31 years ago. Unlike many others, it didn't take long for me to get a diagnosis. My doctor thought I might have cancer in my back, and wanted to refer me to a bone oncologist. My insurance would only let me go to a doctor they chose, who was a pediatric oncologist. (I was 38!).

Getting a psoriatic arthritis diagnosis

After looking at my test results, he diagnosed me. I was referred to a rheumatologist. He was great, and I went to him for close to 30 years, until he retired. He saw me through many flares and worked with me to find a medication combination that worked for me. He retired and I saw another rheumatologist in his practice for a year, before their office closed. I have not seen a rheumatologist since 2018, about 5 years now. My husband and I retired and moved about 20 miles away. I tried to find a rheumatologist that was accepting new patients, without luck. My primary continued to prescribe only 1 of my medications.

Visiting a new rheumatologist

The arthritis in my hands has become a major source of pain, so I asked my primary care about what I could do. He referred me to a rheumatologist, and after a 2 month wait for an appointment, I saw him yesterday.

After a cursory exam, he told me that he found no signs of psoriatic arthritis, ankylosing spondylitis, or gout! He is sending me for blood work and x-rays, and I'm supposed to go back in 3 weeks for the results.

Questioning my diagnosis: Has this happened to anyone else?

I am reeling, how could a "misdiagnosis" go on for so many years? I have been to many other doctors, hospitals, etc., and had many tests, xrays, and blood work, over the years, due to work issues. No one has ever questioned my diagnosis. I am curious to know if anyone has ever had that happen?

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minelcannucciari Community Admin
Hi <inline-mention username="debbie71016" user-id="3282122"/>, thank you for sharing some of your story with us. I would also be reeling after learning this new information. I hope community members will chime in to share their experiences. We shared your story on our Instagram page to get some more visibility. I'd just like to pass along a tip one person shared with us (though maybe you've already done so!): "I find it helpful to bring old records to new docs-especially previous test results and reports. No denying that reality." I hope you're able to get more answers soon from your test results. As you mention, for a lot of people, getting a PsA diagnosis can be difficult. I know getting access to a rheumatologist is really tough, especially right now. But if you're able to and depending on your test results, it might be worth looking into a second opinion, as I know a lot of people in the community have found it helpful. Please update us on how things go, if you feel comfortable doing so. Thinking of you, Minel (Team Member)
1. debbie71016 Member
 <inline-mention username="minelcannucciari" user-id="3301907"/> Thank you for replying to me. I did bring my previous records, 70+ pages! The doctor said he would look them over before I go back in three weeks. Had the blood work and xrays today, so we will see what they show and go from there.
Eric_the_Eric Member
Wow! Thirty years with a diagnosis of PsA, and then suddenly, no PsA! Well, whether or not you have ankylosing spondylitis or not is something that would be pretty evident on x-rays, since it often involves fusing of the vertabrae, especially after thirty years. So, this is something that either doctor could misdiagnose if they ever failed to order films. Were I to see a rheumatologist today, without providing any medical history, I would unlikely be diagnosed with PsA due to low disease activity at present. Age, wear and tear on the body, and the like, can often mask an underlying disease like PsA. But if your new rheumy is certain it isn't PsA, by all means, feel free to challenge him on his diagnosis (or in this case, lack of a diagnosis?). You have thirty plus years of medical records that would seem to back up the conclusion that you suffer from PsA. But, hear the new guy out, see what he has to say. If he still insists that you do not have PsA, even after reviewing 30+ years of medical records, then you will have the unenviable task of seeking out a new provider. Good Luck!
1. debbie71016 Member
 <inline-mention username="Eric_the_Eric" user-id="6704533"/> Thank you for your reply! Yeah, I am shaking my head over this. I brought my records with me, and left a copy with the doctor. I had blood work & xrays done today, so we'll see what shows up, or doesn't show, I guess! I will post what the result is in three weeks.
Amy68 Member
I'm with <inline-mention username="Eric_the_Eric" user-id="6704533"/> on this one. Don't be afraid to question or challenge the new Rheumy. I know it can be difficult to find the right doctor - there are only a dozen rheumatologists within a hundred miles of me, and only one of those seems to be well-versed in psoriatic disease. Not all are. Please keep us posted. 
1. debbie71016 Member
 <inline-mention username="Amy68" user-id="6765940"/> Thank you, I will post again after my next visit.
Diane T Moderator & Contributor
Hello <inline-mention username="debbie71016" user-id="3282122"/> , Just checking in to see how you are doing. Your story was so intriguing that I am curious as to what the healthcare team did to get to the bottom of this. Did they find out what you really have? Let us know how you are doing. Diane (Team Member)