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Can’t get a diagnosis

I have had psoriasis for nearly 30 years. About 15 years ago I began experiencing extreme shoulder pain. I went to a doctor who told be based on my history of skin psoriasis that it was Psa and wanted to perform surgery to shave off part of my collar bone to reduce the friction. I declined. He did give me a cortisone shot, which worked for about 3 weeks, but he told me that I was too young for regular cortisone shots. So I just dealt with the pain, which eventually lessened. A few years ago I developed peripheral neuropathy in my feet, though I am not diabetic nor do I abuse alcohol. My neurologist referred me to a rheumatologist in case my neuropathy and psoriasis are related. The rheumatologist told me I don’t have any arthritis markers in my blood despite my symptoms and said there was nothing he could do for me. I have constant pain in both shoulders, making dressing difficult, occasional pain I’m my lower back and a few joints in my fingers. Does anyone have any suggestions for what questions to ask or any tests to ask for that might get a diagnosis even without arthritis markers?

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Comments

  • Lirael
    1 year ago

    See another rheumatologist. This one sounds like a dope. I had tendonitis and bursitis of hips for a few years before severe pain and loss of mobility in shoulders 18 months ago. I saw at least 3 different GPs before I could even get a referral to a rheumatologist with a provisional diagnosis of polymyalgia rheumatica even though I’m too young to fit the profile. Had to travel further afield to find a rheumatologist available quickly. The one I see is young, enthusiastic and a great listener and explainer. He immediately put me on a one month course of prednisone which resolved the shoulders and started me immediately on DMARDs with new provisional diagnosis of RA. MRIs of hands and SI joints confirmed PsA instead. In order for these MRIs to be most effective for diagnosis, I was told no prednisone or NSAIDs for two weeks prior. I have monthly blood tests for inflammation (ESR and CRP) and monitoring of side effects of meds which do tend to be affected by flares. However, they’re not off the charts. Another blood test is CPP. Until the DMARDs kicked in (talking 3 months here), shoulders did need a repeat of course of prednisone, but have never been inflamed since. They went from crunchy and excruciating, back to normal as if it had never happened. I couldn’t stand to live with that like you have. Start asking around your community re rheumatologists and maybe you’ll get some good recommendations. I also have neuropathy in feet i.e. no sensation in some toes and around heels. All the best

  • CathyD moderator
    1 year ago

    Hi @poohcat,

    Ugh this sounds super frustrating. I’m sorry you are having to go through all of this. My rheumatologist told me that it’s possible to have psoriatic arthritis and to have normal blood results. Something that can help with diagnosis is imaging – X-rays, MRIs and ultrasounds. We have some information on these tests, which I hope will be helpful: https://psoriatic-arthritis.com/test-diagnosis/

    The advice from @shelly of taking photos and keeping a journal of symptoms is a great idea too. It may be necessary to seek a second opinion, if this would be possible. Please keep pushing for answers – you deserve to know what’s going on and to get some relief. We’re always here if you need information or support <3

    -Catherine, Community Moderator

  • shelly
    1 year ago

    Hi.. I am recently diagnosed with PSA after bad episode during summer and all my bloods have been clear. I took lots of photographs of swollen hands, fingers and toes, also my husband filmed me trying to get out of bed. I kept a small journal of all my symptoms as there is quite a list.. Take it with you to rheumatologist. I never had psorisis but have had very itchy skin and eyes then a couple of small patches have appeared on my elbows/arms. Hang in there , i knew something wrong with me for 10 years , I had diagnosis of soft tissue rheumatism but no one take me seriously and some dont believe it exists even tho it has been equally as bad as recent episodes which i now know is PSA ..good luck . shelly

  • Lisa
    1 year ago

    My Doctor ordered full xrays, bone scans, and specific blood work to show arthritis markers. They reviewed my medical records. One visit showed PSA. I had irregular heartbeat, horrible skin rash (which I had been told was eczema) awful pain and swollen hands, eye issues – blocked drainage – had surgery, back pain, hip pain. My doctor looked at all it with a team. They concluded that I should begin Humira. I did and with the first dose I saw results. You should find another doctor.

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