I Can't Get Diagnosed. What Now?
From our “Psoriatic Arthritis in America 2016” survey, we found that the average time from the first symptom of psoriatic arthritis to diagnosis was 6.6 years.1
In addition, 41% of survey respondents said it took seeing more than four medical professionals before they received their diagnosis. Knowing that it can take so long and be so difficult, what should you do if you can’t get a diagnosis?
The journey to a psoriatic arthritis diagnosis
It's worthwhile to note that it may very well be you don't have psoriatic arthritis, but something that presents similarly. It's not uncommon for patients to disagree with their doctors about their diagnosis, just make sure your doctor can articulate to you why they don't think you have psoriatic arthritis and ask for clarification on anything that contradicts the information you've found.
Here are a few tips, suggestions, and insight into getting an accurate diagnosis...
Keep a journal of your psoriatic symptoms
During medical appointments, it can be challenging to remember all the symptoms you’ve had that might be relevant, especially if you’re battling fatigue and brain fog. Keeping a journal of your symptoms and bringing these lists with you to appointments can be very useful.
Track symptoms most associated with inflammatory arthritis, like joint pain, stiffness, and swelling, and symptoms of psoriasis (that 85-90% of people with psoriatic arthritis are first diagnosed with).
In addition to these symptoms, do you have nails that pit, break, or lift away from the nail bed? What about chronic plantar fasciitis/tendonitis, balance issues, or a history of uveitis? Bring these to your doctor’s attention too.
For those who experience periods of flaring and remission, it can be hard to get an appointment during a flare, when symptoms are most visible. Take pictures of any skin flares, nail issues, swollen fingers, toes, or joints, and bring them with you to your appointments.
These can help your doctor better understand the extent of your condition.
Get a rheumatologist referral
Rheumatologists are medical doctors who specialize in autoimmune and musculoskeletal conditions. While you may be diagnosed with psoriatic arthritis by your general practitioner (GP) or even by your dermatologist, generally a rheumatologist is better equipped and has the specialized expertise required to diagnose and manage psoriatic arthritis.
If your GP is stumped or is only managing your symptoms with short-term solutions, see if you can get a referral to a rheumatologist.
Arm yourself with knowledge
Even after doing all of the above, you may have to double down on your self-advocacy efforts. Maybe your doctor ordered bloodwork to check for inflammation and it comes back normal. Know that about 50% of people with PsA do not have elevated levels of the ESR and CRP inflammatory markers2.
Maybe all your X-rays look clean. Know that X-rays can detect significant damage caused by advanced disease, but that they are not effective at visualizing early signs of inflammation (MRIs and ultrasounds are much better for that purpose). Don’t be afraid to print off research articles and bring them to your appointments.
What to do when all else fails?
If your doctor isn’t taking your concerns seriously, or you can’t find a qualified rheumatologist, I would suggest reaching out to the National Psoriasis Foundation3. They have a provider directory as well as a Patient Navigation Center that can help you find a rheumatologist who has experience diagnosing and treating psoriatic arthritis.
They can help you work with your insurance, and they offer all this support one on one and at no cost. If you live outside of the USA, see if you can find any NGOs or charities that advocate for patients with psoriasis and psoriatic arthritis, as many offer similar services.
Join online support groups
No matter where you are in your journey, join an online support group. Find somewhere to share, be heard, and find others with shared experiences. This website is a great place to start, as is our Facebook page.
Feeling isolated, dismissed, or made to feel like this is all happening “in your head,” would make anyone want to give up, but you are not alone in all of this. Come and seek support from a community of people who get it.
For those of you who finally have a diagnosis, what helped you get it? Please share your advice for others in the comments.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?