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Frustrated!

Hello there. I’m new to this and was diagnosed with psoriatic arthritis. After many years of suffering from joint pain, I was finally diagnosed with psoriatic arthritis when I shared with the rheumatologist that I had a rash in back of my neck, a mild rash near my elbow, and my nails were horrible, that I even had 2 toenails fall off. Before I had a chance of saying all this, this pretty young MD stated that we all have aches and pains as we get older. I didn’t like her attitude which eased up after the realization of my diagnosis. She put me on leflunomide which I later learned tripled my liver enzymes.

I wanted a 2nd opinion which brought me to an MD who was very attentive and I really liked her, so I chose to continue with her. I have all negative blood tests but a hand ultrasound she ordered showed evidence of PA. As soon as she looked at my nails she was almost positive and that US confirmed her diagnosis. I loved this second doctor. So the second doctor rightfully did not want me to take anything until that was resolved. Unfortunately, after only 2 visits with this wonderful MD who made me assuringly comfortable, she left the practice far from my traveling area. After a few months, I recently went to her associate. This MD questioned my diagnosis of PA after 2 MDs confirmed the PA. Now I’m given a boatload of other expensive blood tests that are all negative. She also wants an MRI of the hand to prove my diagnosis.

(Since those liver enzymes were tripled, I had a liver which the gastro found it to be a fatty liver along with the effects of leflunomide.)

After all this, and totally not liking this latest MD, I don’t think I’m going to return to her or get the MRI of my hand since 2 other MDs diagnosed the PA. I could kick myself for even doing all the labs she ordered. It’s been such an expensilence.’t know if I should get yet another opinion or just suffer in silence . Besides symptoms I mentioned, I have much joint pain especially in hands and neck. My feet are affected as well as lower legs like the Achilles as well as other joints. Any thoughts?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dcopert author
    2 months ago

    Thank you for your thoughts. She does have the records but since my inflammation markers are normal, she doesn’t want to confirm my diagnosis and give me treatment.

  • CathyD moderator
    2 months ago

    Ugh, @dcopert, I cannot imagine how frustrated you must feel. Do you have a follow-up appointment with the rheumatologist, either in general or to discuss the x-rays? I am sending you love and strength!! <3 -Catherine, Community Moderator

  • dcopert author
    2 months ago

    Thank you for your support. I do have an appointment in 3 weeks after x-rays and labs. Then I guess we’ll see what’s what.

  • dcopert author
    2 months ago

    Well, I had my appointment with a new Rheumatologist. She was very sweet and listened to everything I had to say. Pushed and pulled every limb of my body. Said my fingernails are most likely psoriasis (didn’t confirm) The rash on back of my scalp is most likely psoriasis (didn’t confirm) After all that, she looked me in the eyes and said with look of confusion, “Well, you know…I really don’t know.” Then she went on to give me some lab orders to get done and x-rays for my hip which has been in much pain this week. Since I don’t have elevated inflammation markers, she didn’t commit to any diagnosis. So, I’m told to take ibuprofen every 4 hours or Aleve twice daily. So, the mystery continues………and frustration.

  • Eileen B moderator
    2 months ago

    Saddens me to hear you’re still trapped in treatment limbo, @dcopert. Frustrating must be becoming exasperating at this point! I’m confused as to why you need a “new” diagnosis at all? Does your new rheumy have your medical records that include your prior diagnosis?

    We can’t offer medical advice or diagnostics, but I’ll gladly provide a few articles you might find helpful as you go through this process again. (Ugh, right?) As far as the new lab work you’re having done, it’s good to keep in mind some people with PsA have normal blood work. More information is under “What if your bloodwork is normal?” in this article, https://psoriatic-arthritis.com/clinical/bloodwork-for-psa-results/. It’s one of the many reasons PsA is notoriously difficult to diagnose!

    Your hip pain sounds just awful, sorry it’s been so bad this week. I hope your x-rays prove helpful! We have a few articles discussing the hip joint, How Are Hips Affected? and here Lower Back Pain. If ankylosing spondylitis is suspected, it’s often not visible on an x-ray until the condition is in an advanced state according to Mayo Clinic. An MRI is more likely to show early evidence.

    It’s also helpful to read the diagnostic criteria for PsA. Using the CASPAR diagnostic model, a patient needs 3 of the 5 criteria, but the presence of current psoriasis is assigned 2 points.

    I hope all these new tests go quickly and you can move on to the next phase soon — treatments that help you feel better! Without hurting your liver, of course. -Eileen, Psoriatic-Arthritis.com Team

  • Kerry
    4 months ago

    I hope you do too!

  • CathyD moderator
    4 months ago

    Oh my goodness. I can completely appreciate why you feel frustrated, @dcopert! As if dealing with PsA and its symptoms is not enough stress.

    Do you have your medical notes from the previous rheumatologist that diagnosed you and did the ultrasound, etc? I am wondering if your current rheumy saw these whether they would suffice… If it would be of any help, the National Psoriasis Foundation have a directory of experienced healthcare providers, which you can filter by location: https://www.psoriasis.org/health-care-providers/physicians-directory – perhaps you may be able to find a different doctor that will give you the support and care that you deserve. And please remember that we’re here to support you on this journey too!!

    -Catherine, Community Moderator

  • dcopert author
    4 months ago

    Cathy, Thanks for your input. I do have my results and visit notes from the MD who I really liked. I plan on bringing that to a new Rheumy I have an appointment with in May. I’m going to ignore everything about the associate who took over and ordered all the tests and MRI. I was trying to get FMLA only intermittently so my job doesn’t hold it against me if I switch my hours on a day I’m not feeling well, or go to any appointments. We have this benefit so missing hours for disease related conditions are not held against us. She will not sign unless I have the MRI. Thanks again for your thoughts.

  • dcopert author
    4 months ago

    Thank you Kerry. The doc I liked diagnosed me immediately when she saw the pits in my nails which were all broken down. Then, the ultrasound showing inflammation confirmed. Hopefully, I’ll have better luck in May with the new doctor.

  • Kerry
    4 months ago

    Wow, this is crazy! I am so sorry you have to deal with this and have zero relief from your pain. My rheumatologist took one look at my skin and my “sausage digits” and diagnosed me easily. I had already had all of the blood work done to rule out other things. I did not have to do all of the test’s you are talking about. I sure hope and pray you get some answers.

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