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A Tale of Rhumatalogists

My Rhumatalogist diagnosed Psoriatic Arthritis and Fibromyalgia five years ago. My mother had it, my Ana and protein tests were positive, it presented asymmetrical (left hard-right foot). I was prescribed Methotrexate. I also see a Dermatologist for the Psoriasis.

Unfortunately, my Rhumatalogist retired and I had to find a new Rhumatalogist. I got in to see one 88 miles from home. He gave me a lecture about how bad Methotrexate was and then sent me for xrays with the diagnosis of Fibromyalgia. His conclusion was that I never had PA. My primary doctor said that I did have PA and I might be in remission. Something that other Rhumatalogist should have considered. My primary doctor was concerned about my liver enzymes so I started weaning off the Methotrexate. Wow, I didn't know how much that medication helped with pain.

Two months later I saw another Rhumatalogist. I spent several hours putting together my family history and my own. I mailed it so it was available prior to my appointment. She came in, told me that she looked at the xrays and concurred that I didn't have PA. I asked if I could be in remission. She said I couldn't be in remission if I never had PA. When I started to show her my foot (classic PA), she said she had other patients to see and left. The total first time appointment lasted 11 minutes.

I really don't want to have Psoriatic Arthritis. I know that I am in a Fibromyalgia flare and stress makes it worse. How can the Internist who sent me to the first Rheumatalogist and my primary doctor say one thing and two new Rheumatologists say another? My first Rhumatalogist's replacement has finally started her practice. I am thinking about seeing her as his handwritten notes are in my records there. Any opinions?

  1. Thank you for sharing with us . I can understand why you would be so frustrated and confused. I really wish you were not going through this back and forth between all these different opinions. It is so hard when you do not get the time and concern from your health care team. I am so glad you have been keeping handwritten notes of all your symptoms. It sounds like you are doing a great job being an advocate for yourself. I would encourage you to see this new rheumatologist. I know this has been a long and painful journey for you, but you deserve to have answers and relief. I am sending you over an article about how doctors diagnose PsA: and an article from one of our advocates about her experience with finding the right doctor: I really hope these articles can help you. I will be thinking of you. Jill, Team Member

    1. Hi @Claudette1985. I absolutely agree with Jill that you should see that new doctor. 11 minutes is not enough time to go through your patient history or much else. Sounds like she dismissed your condition. I hope you find the answers you need. Stay strong and definitely advocate for what you feel is right. Only you know your body and how you feel. We are here for you. Vickie W., Team Member

      1. Thank you, I had an appointment with my Psychiatrist this morning. She reminded me that I had had a great support team. The first Rhumatalogist, Dermatologist, Orthopedist, Primary Doctor, and she worked together to make sure my medications and diagnoses were known to all. She did say to go see the new Rhumatalogist as she would have all of the records. She said not to dwell on the others as they hadn't been with me for the onset in order to see how I have responded to the many medications I have been on. I just hate being dismissed. Oh, and my Orthopedist said a reason for the lack of inflammation was probably because I had, a week prior, corrective surgery on my ankle/foot and was taking large amounts of anti-inflammatories. I just do not want this to advance. My mother was horribly disfigured and disabled from untreated PA. I don't want that. Thanks for hearing my rant and the resources. I will look at them.

        1. In ten years I have seen 5 rheumatologists - the worst poked me for 2 minutes and told me I had fibro, "go see your doc for meds". I travelled 6 hours for that one and sat in the waiting room for an hour.

          The best (my current) - I saw a nurse for about an hour who took my whole history, poked my sore body all over and graphed my pain, then the rheumie came in after reading it all in the other room and reviewing my films and talked to me - it was almost a two hour appointment and I was diagnosed with moderate PsA ("it's certainly not mild"😉.

          The other three ? One sent me off with a MS possible diagnosis (devastating) that proved wrong after an MRI and neurology visit. Another did a quick assessment and couldn't find anything. My second last one suspected "some sort of inflammatory arthritis" but played his cards close to his chest and wouldn't tell me much - I moved and COVID happened so I never saw him again.

          Keep searching - you need someone who will take the time and hear you and assess you. The first journey is getting the diagnosis, the second is finding the right meds.

          1. Wow @northernelf I could not imagine driving 6 hours to get to see a Rheumatologist that just basically dismissed your pain as fibro. In the first place I cannot even ride in a vehicle that long before my whole body starts revolting against me. I am sorry you had to go through that. I am happy you found your current and best doctor. It sounds like they really took the time to listen to you. It definitely makes a difference in living with this disease when your doctor and you are on the same page. Thanks for sharing your story with us. Vickie W., Team Member

          2. I am thankful that we moved to a tri-state area. I have options within two hours of driving several directions. I just get so upset when I have to wait four or more months for an appointment only to be returned to my primary doctor that doesn't handle PA or Fibromyalgia. However, he totally understands and takes his time to bring everything together. I see him tomorrow so I am again hopeful.

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