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My psoriatic arthritis diagnosis story did not begin like most others. I was not seeking an answer to pain but instead relief from my second chronic condition, fibromyalgia.
Had the diagnosing doctor of my first chronic illness been more knowledgeable about it, I would have received my PsA diagnosis much sooner. But he wasn’t, and like him, I assumed psoriasis was nothing more than a rash.
One would think that my arthritis diagnosis story would have ended after receiving it from one of Scottsdale, Arizona’s top rheumatologists, but it did not. I was bullied into having to prove his diagnosis by greedy physicians and insurance companies in the years to follow.
Here is my story.
Disclaimer: I am NOT a medical professional. Always consult with your doctor if you suspect a diagnosis or are experiencing any health issues. This blog post contains affiliate links. I may earn a small commission to fund my coffee drinking habit if you use these links to make a purchase. You will not be charged extra, and you’ll keep me supplied with caffeine. It’s a win for everyone.
My First Psoriatic Disease Diagnosis
In 2001 I made an appointment to see my primary physician for a rash on my neck. It was admittedly tiny and not something I would normally see a doctor for. Yet, there was something different about this rash. It burned and itched like nothing I had ever felt before, and nothing I put on it provided relief.
To my dismay, I was laughed out of the exam room and told to treat it with an over-the-counter dry scalp shampoo. So I did. And within two days, the rash had spread. I was covered head to toe.
Instead of laughing at me when I returned, my doctor ran to his office to grab a huge medical book. He was giddy that my rash ended up being a textbook case of psoriasis. Never seeing it to this degree in person, he invited the entire practice into the exam room to show them my rash.
I was thankful for a diagnosis and prescription that relieved the pain, burning, and itching, not to mention clearing my skin. I didn’t think there was anything left to know about this chronic disease. And apparently, neither did my doctor. Because had either of us done some research, we would have realized that there was a lot more going on.
Related Post: Psoriasis and Psoriatic Arthritis Connection
I Have Psoriatic Arthritis?
After moving from Colorado to Arizona, I experienced a reprieve from psoriasis and the symptoms of joint pain, muscle aches, and fatigue. My relief continued while I was pregnant with my daughter. But in 2003, the pain and fatigue became something I could no longer make excuses for or ignore. Instead of occurring occasionally, they took over my body and life.
After ruling out other diseases and disorders such as rheumatoid arthritis, lupus, and multiple sclerosis, I was diagnosed with fibromyalgia. After several failed attempts to reduce my pain and symptoms, my physician referred me to a rheumatologist.
During my initial consultation, my rheumatologist asked me why I didn’t mention my psoriatic arthritis diagnosis on my paperwork. I said that I had no idea what he was talking about.
His keen eye and attention to detail caught a tell-tale sign of PsA. I often wondered if it would have been caught had I worn closed-toed shoed, but thankfully my flip-flops couldn’t hide my hideous toenails. After ruling out any other possible illnesses and with my visible and invisible symptoms checking every mark, he confidently diagnosed me with psoriatic arthritis.
Related Post: Is It Fibromyalgia Or Something Else?
Arthritis Diagnosis Drama
With a PsA diagnosis from a leading rheumatologist, one would think there would be nothing left to question. Yet, after moving from Arizona to California, I had to go through the entire diagnosing process again!
There was no reason for retesting. My new doctor couldn’t even give me a valid reason other than his not believing I had it. Had I not been in so much pain, I would have handled the situation very differently. But you know how it is; pain makes us desperate and willing to do whatever it takes if it means having a hope of relief. And as predicted, the results were the same. All signs pointed to a psoriatic arthritis diagnosis.
Think my arthritis story is done? It should be!
After my husband and I switched from a PPO plan to an HMO, I had to go through the process all over again! Twice, I was hit with the financial burden of proving the diagnosis made by a well-respected rheumatologist. If the monetary expense wasn’t bad enough, it was physically and emotionally taxing too!
Neither of the last two physicians had a valid point or reason for questioning my PsA diagnosis. There was no excuse other than milking more money out of a new patient, and that my friend is uncalled for.
Tips For Dealing With Doctors Who Question Your Psoriatic Arthritis Diagnosis
They say hindsight is 20/20. In addition to psoriatic arthritis, psoriasis, and fibromyalgia, I was also dealing with the fallout of a botched hysterectomy and another surgical error. I wished I hadn’t felt so desperate to finally find a physician willing to take on a patient with such complex pain management needs.
The negligence of these surgeons created a mess that most doctors have run from. Because treating them acknowledges that mistakes were made. So to not have these physicians say they were willing to help if I allowed them to reconfirm an already firm autoimmune arthritis diagnosis, I felt I had no choice but to comply.
Now that I know that no one will ever help me with the surgical damage, I would have handled the doctors who demanded I be retested differently.
What I should have asked when they requested/demanded retesting for psoriatic arthritis:
- What makes you doubt my PsA diagnosis?
- Is there something else you think is responsible for my symptoms?
- Submitted my original diagnosis to my health insurance provider.
There is no excuse for a patient to go through the process without a valid reason, let alone pay for retesting. Additional testing would have been appropriate to determine which type of PsA I had. But that only occurred after I inquired about the form(s) I had, 17 years after my initial diagnosis. Testing to check for progression is the only other acceptable reason.
It is bad enough that so many patients have to fight for a diagnosis. And no one should have to feel the need to defend it once diagnosed.
Related Post: Five Types of Psoriatic Arthritis
What about you?
Was receiving your initial arthritis diagnosis easy or difficult?
7 thoughts on “One Psoriatic Arthritis Diagnosis Should Have Been Enough, Why It Was Not”
I have noticed that I am treated differently and with more respect when my husband is in the room with the doctor.
The doctor, pulmonologist in this case seems to take everything more seriously and take his time with me. It doesn’t have to be your husband, but you could borrow someone with a deep voice and interest in your health to go with you.
This makes me so mad!!! I wish you would have been believed in the beginning and treated properly, but money always motivates situations like this. Your diagnosis didn’t change just because your insurance plan did! I’m happy you gave us different ways to handle a situation similar to this. I hope you never experience anything like this again.
Thank you! I am ready for them next time. Ha Ha!!
What an absolutely anger inducing situation! It’s bad enough that it happened once, but two times. And yet, I can relate. I had been diagnosed with sleep apnea 13 years before and was using my CPAP machine. I started to wake up during the night gasping for air. I went for a second sleep study and was told that I needed to switch to a BiPAP machine. Medicare would not pay the cost of the supplies because the physician signed the order electronically. They wanted his handwritten signature and he refused. I either needed to do another sleep study with a different doctor who would sign by hand or pay for the masks out of my pocket. Insurance companies are stupid, and only concerned with profits not people.
Ugh!! I totally blame the insurance companies. They’ve made it impossible for doctors to treat us individually.
Terrific article! Sadly, this is all too common and so many of us have had situations ranging from not being taken seriously to having unnecessary retesting. Thank you for sharing your advice, too. I recommend having an advocate, because it’s so difficult to advocate for yourself when you are struggling with your health. My sisters have always been my advocate, and they have been a tremendous help in being able to get the right level of attention and treatment.
Thank you Sandy! I’ve reached the point of refusing to see a doctor without my husband or someone else I trust to advocate for me present.