By Rebecca Keymaster
How long did it take to get your diagnosis?
By Rebecca Keymaster
How long did it take to get your diagnosis?
That’s a tricky question.
Looking back, I likely had PsA symptoms going back to my late 30s and early 40s. I just didn’t recognize them for what they were. But I wasn’t diagnosed with it until age 47. I had a bad bout of bronchitis that resulted in chest pain that would not go away. That’s what ultimately led to my initial diagnosis. But even then it wasn’t clear because all my blood test levels were, and still are, within standard range. It took an MRI showing inflammation in my right wrist and hand for my new rheumatologist to confirm the diagnosis and start me on Humira.
It took about 40 years for them to finally diagnose me. I swear they don’t know what their doing half of them, sad but true
I hate to say I agree but my experience with PsA has lead me to believe that a great many doctors know less than I do. The good ones are few and far between.
So this may be just hopeful handwaving but how do they (I) know that I really have PsA? It’s all based on a “clinical diagnosis” which means there is no real test for it. From what I read here, every one of us has different symptoms and some may, or may not resemble mine. So how do I know?
Yes, fatigue seems to be a common thread among us, beyond that… I have some soreness in my fingers but that’s the only joints affected. My big one is the pain in my tendons. By mid afternoon my legs and sometimes my arms throb and become tender to massage. This is manageable during the day but impossible to sleep with. With no sleep, the vicious cycle begins.
But is it really PsA?
By VickiN Moderator
ScottJ, you’re so right! A PsA diagnosis sometimes feels like a cobbled-together assortment of symptoms. There really is no definitive test, just a checklist of symptoms that push you ever closer to the diagnosis. Presence of psoriasis, nail involvement, lower back involvement, tendonitis, certain genetic markers, balance issues, uveitis, etc. etc. But it’s quite confusing that not everyone checks all the boxes. We’re kind of like a charcuterie board… all a little bit different, but somehow we belong together 🙂
(Oh now I’ve gone and made myself hungry).
-Victoria, Community Moderator
Ok… I can’t even touch my wrists together…. what does that mean?
You know, Scott, I wondered the exact same thing for a long time. Do I even really HAVE PsA? The main reason I wondered is because my blood work always shows my inflammation markers within the standard range. But at the same time I was herniating discs in my spine, my neck was so sore I could not turn my head and my right hand/wrist was always stiff. And my nails were pitted, which is an indicator.
Based on a clinical diagnosis, primarily from MRIs, my rheumatologist diagnosed me with PsA. And I think she was right because the morning I woke up after my very first Humira shot the pain was gone. Could it be something else? I suppose. But it’s definitely a autoimmune disorder of some kind causing the inflammation, otherwise I doubt the Humira would have worked so well.
But … yeah. It’s a tricky thing. And it’s natural to wonder since there’s no one test they can give you to say, “Ah ha! It’s PsA!”
Hi Sean , This REs your February 5 post(reply) on this thread. Just over a year ago I was washing out my third biologic and deciding whether to go through the whole process of starting another. The variety of thoughts going through my mind at the time (TNF-a, IL-17, et al) brought me to the decision to simplify things in an Occam’s Razor kind of way. This was for my peace of mind only.
There are so many shared symptoms of inflammatory diseases/disorders/conditions, the only thing that seems to distinguish one from another is a lack of one or two symptoms. That one, lacking, critical distinction may show up in my next inflammatory episode. Tell me this isn’t crazy-making. But I digress.
I have chosen both inwardly and outwardly to accept the PsA diagnosis. I mean everything fits: pitted nails, asymmetrical joint involvement, prior history of psoriasis as well as family history of “rheumatism”, etc. Yet the more answers I search for the more questions I find. So, to the Occam’s Razor thing, when it comes to the personal fight, my priority is fighting inflammation. That’s what I now base my lifestyle on(diet, medicines, exercise, daily routines).
I know, sadly from experience, if I go to five different doctors with the same complaint I’ll get five different answers. Shortly after being diagnosed with PsA, I told this to my Primary who smirked, said “What’s that?” and immediately Googled it in front of me, then said “You mean Arthritis Psoriatica”😐 I am not down on doctors because I am fortunate to have had some excellent ones. But just because someone has a driver’s license doesn’t mean they have a lick of common sense, compassion, or integrity. Just saying.
I see a reputable rheumatologist who has diagnosed me, for the past 15 years or so with gout,RA, Austoarthritis, PSA. I was on Humira for 8 years and now I’m on Enbril. When I go through an episode, I ache from head to toe and it becomes difficult to differentiate between arthritis pain, bursitis, and a mystery neural malfunction the Drs call neural fasciculation, jumpy nerves. I’m so sick of all the Drs guessing instead of just telling me a) they don’t know or b) I’m just plain nuts. I have a drawer full of meds which makes me wonder how you deal with the various diagnosis’s. I’m also very sorry for all crap I’m unloading on you. I’m just kinda looking for any comments about PSA, Ra, various meds etc. By the way, I have PSA in my feet. I have found a company on the web – OrthoFeet, that makes shoes and socks that really help a lot.
Anyway, my apologies again.
By Rebecca Keymaster
No “sorry” allowed – you can come here anytime to vent, rant, complain – whatever. It’s ok. That’s what we’re here for – good times and bad.
I was diagnosed with RA initially that was 2004, blood test was negative.
Treated with all the usual meds blah, blah!
About 3 yrs ago seen a different rhuemy as mine was on holiday.
He examined me thoroughly and saw a subsequent rash on my ankles. He said there and then that I had PA and not RA.
For some reason his face was a picture.
I have not seen my old rhuemy since that day, wonder why!
40 years. Yes, forty. “It” came on with pericarditis, pleurisy, fatigue, progressed quickly to a painful body, foot pain so excruciating, I (female) had to buy men’s loafers and thick socks to even walk, pitted nails, etc, etc, etc.
Treated with “take two Aspirin every four hours and see me in three months”. Dismissed with “nobody is that tired” and antidepressants.
I was 33.
Last year, and then at 73, a competent internist finally, following my brother’s ‘sero-negative ankylosing spondylitis’ and specific gene testing for risk assessment, put all the many pieces together.
Of course, by now, the consequences of no treatments are so obvious, you have to be gloriously arrogant as a rheumatologist to be dismissive. And yet, only months ago, one was and said “ you don’t have anything till I say, you do”.
Unfortunately, being competently diagnosed seems to be a game of good luck/bad luck. I’m thankful for finally being able to put a name to ‘that devil on my back’, and through that ‘name’ follow the trail of information on this PsA site.
I mean, really, who goes to a doctor and says “excuse me, but my eyeballs hurt”…but now I know why, so the pain is easier to shoulder, and the antidepressants were kicked to the curb. Being unhappy, sad, angry or frustrated are, at times, the appropriate reactions. It’s not a depression.
Thanks for listening PsA.
I was diagnosed with Parkinson’s disease when I was 37. Fast forward I am now 48 . I do not have Parkinson’s disease. Slow signs of some kind of joint problem Drs can’t seem to figure out. Until a month ago when my whole finger swelled with a rash . I have heel pain, and foot pain for many Year’s, severe whole body stiffness , joint pain etc. From what I gather PSA is hard to diagnose . I feel that I’ve been completely ignored by all the Drs I’ve seen over the year’s. Til now. I completely understand how you are feeling. The thing that bothers me the most is lost treatments all these year’s. I imagine you feel the same. Hope we both start feeling better soon. Hang in there.
It was reassuring to read VickiN and Sean’s comments about not being sure whether it was the right diagnosis. I wondered this too.
My diagnosis was very quick. Once I was referred to a Rheumatologist, she diagnosed it immediately. It was based on several factors: no inflammatory markers in my bloods, a parent with psoriasis and my history of “eczema”, pitted nails, and several painful/stiff joints, progressively worsening joint pain/stiffness (e.g. more joints, greater pain, longer periods of flare-ups), tender joints when pushed on.
In one way, it felt like all the pieces of the puzzle were put together with the diagnosis. I have been trying to alleviate pain/stiffness in my neck and shoulders for around 4 years, seeing physios, chiros, having x-rays – all with no improvement. And I’ve had knee trouble for over 7 years with similar efforts and no outcomes. I’ve brushed off symptoms as “oh I must have injured my knee at some point” or “I’m stiff because I work in front of a computer / am anxious” but I’ve honestly just felt a bit unlucky and frustrated. And the tiredness! Oh my goodness, I’m relieved to know that there’s a reason for it and this exhaustion is not just regular me!
In another way, I felt like pieces of the puzzle were missing. Firstly, because my symptoms didn’t exactly align with the ones I googled / there is variation in how the disease presents, and secondly, because of the lack of “concrete” evidence available for the diagnosis (such as a blood test result).
Hi FrancescaD, I have always been physically active in both work and recreation. In my mid-thirties I started having odd pains now and then which I would attribute to pulled muscles from work or sports. Ibuprofen usually took care of the pain, be it back pain(heavy lifting at work), leg pains (didn’t stretch enough before the game), rotator cuff(overdid the swimming). I did wonder why I couldn’t build up stamina for swimming laps or walking more than four miles without tiring and/or cramping. Thirty years later my Primary Care Physician refers me to a rheumatologist out of concern for what he considered an unhealthy daily dose of ibuprofen. By then I needed 1600mg + to get through an 8-hour shift. That and two pots of coffee to keep me awake. Color me incredulous when the rheumatologist diagnosed PsA! (I might have scoffed) The rheumatologist just stared at me for several seconds. She then explained in no uncertain terms how she came to the diagnosis as well as the implications. Turns out she is the best doctor, bar none, I have ever had. A part of her diagnosis speech remains etched in my memory as: “This is a very unpleasant disease. I (the doctor) believe it needs to be treated immediately and aggressively which is why I want you to have these tests done today so we can begin. The choice is yours.” Six years later I’m on my fourth biologic and forever grateful for that fateful day.
I did all the internet searches. Remained skeptical for two years, especially when my blood work would come back “All WNL” despite the aches and pains the day the blood was drawn, especially with a negative
C reactive protein. Then came the uveitis, the Sjogren’s Syndrome, the unbelievable fatigue. The jigsaw puzzle of my lifes medical history started to come together. You have my sincere best wishes for you on this journey. Know that you aren’t alone.
Sometimes I wish I had your rheumy @rojo . I’ve asked her on a few occasions about what the future might look like and she always seems to dance around the answer… Like, “with the right medication..” and “there are coming out with new science all the time..”
While I appreciate her positive outlook, it doesn’t do much to help mentally prepare myself for all the possibilities that the future might hold. Sometimes we just need that direct, open response. Not brutal or anything, just an honest opinion based on their experience.
Sending you gentle hugs today 🙂 -Leanne, Community Moderator
Seriously! If I am able to handle reading and understanding the pharmaceutical blurbs of anti-rheumatic medicines, enough to make an informed decision to either take them or not… I mean how can I make an informed decision if I don’t know exactly what sits on the other side of the scale.
We members of this community surely have many moments and days of vulnerability and frailty when a soft touch is heaven. We may have days and months of brain fog, depression, and confusion. We may need devices to be mobile and velcro shoe ties. Then again considering the heart-rending and mind-bending life-changing decisions we have made I would hope no one would underestimate our emotional strength.
When I first went to my PCP regarding my initial symptoms she asked if I was depressed. When I told her my main symptom was fatigue, which was causing low sex drive, her next question was “well do you like your husband?”
I basically diagnosed myself, and the only reason I was able to ask for a referral to a rheumatologist was bc of my knowledge in the medical field; I’m a physical therapist so I’m familiar with most autoimmune diseases. Without this knowledge and background, I can’t even imagine how long it would’ve taken to get a diagnosis. But now, thinking back to my childhood, I’m pretty sure I had the arthritis way before the skin lesions.
I acknowledge that it’s a very difficult disease to diagnose, as there is no test or blood marker for this disease, but I just wish healthcare providers listened more, and didn’t jump to making a mental health diagnosis.
Very frustrating, but thankful I’m on the right path to prevention and management!
What has made my diagnosis difficult to really believe and accept is that I essentially had to direct my doctors to the diagnosis. The only reason I came up with it is because I had a good doctor 20 years earlier look at how I held my hands and say “One day you will have Psoriatic Arthritis”. I had no idea what that was but it stuck in my mind.
So… I have a test for all of my fellow psoriatic-ites..
Hold your hands in front of you together with your palms down flat and wrists together.
Do your hands stick out in front of you straight or do your hands angle out to the sides like the wings of a butterfly?
That was the test that this doctor ran 20 years ago. Sure enough, about 18 years layer… boom! self diagnosis – Reumatologist confirmed.
That is fascinating @scottj! I literally just spent like 5 minutes trying to put my wrists together and NOT have my hands flail out like a sea otter’s flippers. If anyone had seen me, boy would they have gotten a laugh. What an interesting little experiment! So much more accurate than a “lack of blood work markers” that is common today. 🙂
Sometimes I think doctors might have been so much better before they began to rely so heavily on blood tests to tell EVERYTHING, instead of listening to the patient. Hoping you are having a “good” day, thanks for making me smile this morning. 🙂 -Leanne, Community Moderator
Is there a place on this site where you could run a poll and see what these results are like?
It might be fun… and maybe even helpful.
ScottJ With your post this thread has definitely taken a turn for the Twilight Zone! I must have been in my teens (dinosaurs still roamed and I was hyper-conscious of my body) when I noticed my hands and fingers looked different from those kids at the desks around me. They weren’t straight like others seemed to be. When I put them together, flat, my right hand fingers all had a definite curve to the right. My left hand fingers all had a curve to the left. They looked more like wings than shovels. I was not happy about this discovery. It wasn’t cool like my cousin who was double jointed. I have only mentioned it to maybe three people over my lifetime. I mean how often does anyone ask one to put their hands together, flat?
I agree this deserves mention as a separate forum/poll topic; maybe, with all due respect to science, a forum topic for the unexplained oddities commonly experienced by many members of our community. A PsAx-files if you will.
Thanks for the AWESOME share!
Hi there, sad and happy to hear from all the people who feel as we do. I too, felt alone in my disease.
I didn’t get my diagnosis until after the birth of my second child, around 30. I believe it all started in my early teens. I was 14-15 years old and I had gotten mononucleosis from my high school boyfriend (thanks alot). I got the confirmation from my mother who was a medical technologist her whole life. That lasted for 3 years…. strong positive. Of course, she was doing my blood work under the radar so I don’t have any medical record of this but I believe it was the mono that started my journey with PsA. I was 15-16 when I noticed that my forearms, especially my right arm, were extremely sore and losing strength. I kept telling my mom but she dismissed them as growing pains. I was also into gardening and she noticed my nails on my hands and feet were peeling up. She excused it as a fungal infection. She refused to take me to the doctors because she could do my blood work and tell from that, or so she thought. One time, she took me to a doctor friend of hers, he was interested in diagnosing medical mysteries…He took one look at my finger nails and just like that, I had PsA. He told my mom about the treatment, methotrexate, but knowing what it was and what it could do, she refused. That was around my early 20s.
Fast forward to my formal diagnosis at 30. I was blessed with a great rheumatologist. He started me on methotrexate and embril. It took about a year of those medications to get me up and walking again. I continued until his retirement, at which point I tried going to the doctor he had trained but our personalities didn’t get along and so I quit(stupid).
I thought I had a great PCP but one particular visit(for pain and referral to a rheumatologist) and he showed his true colors. Our conversation ended with his statement of, “I’m a doctor, I treat people, it’s what I was trained to do. But, I didn’t spend thousands of dollars and years of medical school to become a doctor just to have Obama and his cronies tell me who I must give care to. I have to treat people like you.” He refused pain medications and his nurse flubbed my referral 3 times. He is no longer my doctor. Of course, this is all happening when social security decided that I was no longer disabled and would be cut off.
Again, fast forward to the present. Thank God, I have my SSI back but my PsA is coming back with a vengeance. Presently I am without a doctor or medications for my PsA. Also I’m without a therapist for my depression and anxiety. I know my family loves and supports me but they have issues of their own. My husband has rheumatoid arthritis. Rheumatic fever being the cause, he was 5. My middle adult child is autistic, Aspergers. My youngest has adhd-odd. I have taken it upon myself to be the caretaker of the family but I’m realizing that I help. I’ve asked and begged for extra help but to no avail. I am still learning how to let go and practice unconditional love daily. But why is it I can’t seem to get a grasp on the whole self-care thing. I’m just finding myself exhausted and overwhelmed now. I don’t know what else to do or where else to turn, the brain fog has me totally lost. Despite all this I remain ever hopeful. Hope is the one thing that has helped me the most through the worst of times. Sorry this is so long, I’ve been through so much more than this but I guess I will save it for the novel. Thank you for this forum…. it feels good to have a place where you can talk, hear or be heard, and be understood. This is healing.
I’d been having symptoms for a few months and finally went to the doc because I decided it wasn’t going to get better on its own.
I had a diagnosis and treatment plan just shy of three weeks after I talked to my gp. I realize now how crazy that is.
I went to my gp with psoriasis and pain in my fingers/hands/wrists/elbows. He suspected rheumatoid arthritis and ordered a bunch of tests and X-rays. I had a follow-up two weeks later where he referred me to a to a rheumatologist. I was in the rheumatologists office 4 days later. He gave me my diagnosis and started me on methotrexate.
It’s been a few weeks now and I’m still trying to wrap my head around it!
By Jake Keymaster
@jillybean – Wow, that sounds like a whirlwind! On the flipside of a long journey to diagnosis, it can also be tough when things seem to move quickly without too much time to process. I’m glad you were able to find this forum! I wonder if you might benefit from an article on our site that is written for someone who might be newly diagnosed (https://psoriatic-arthritis.com/living/dear-friend-newly-diagnosed/). So glad you’re here and I hope you find the community and resources here helpful.
-Jake, Psoriatic-Arthritis.com Team
In hindsight if I could replay and edit the scene in the rheumatologist’s office when I was diagnosed, who else but the inimitable Bette Davis would be standing behind the doctor’s shoulder to add, sotto voce, “Fasten your seatbelts, it’s going to be a bumpy night!” ~ cut and wrap