Forums


General Discussions

Time to diagnosis

  • By Sean

    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.

    Reply Created with Sketch. reply
  • By olyndy

    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

    Reply Created with Sketch. reply
  • By Sean

    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.

    Reply Created with Sketch. reply
  • By ScottJ

    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?

    Reply Created with Sketch. reply
    • 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

      Reply Created with Sketch. reply
  • By Sean

    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!”

    Reply Created with Sketch. reply
  • By mickey

    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.
    M.

    Reply Created with Sketch. reply
    • By Rebecca Keymaster

      Mickey,
      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.

      Reply Created with Sketch. reply
  • By bros

    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!

    Reply Created with Sketch. reply