Possible misdiagnosis

I was wondering if its possible to get some advice, i was diagnosed with inflammatory arthritis 7 years ago, since i have been on Hydroxychloroquine and Methotrexate. I moved and had to change hospitals, i saw a rheumatologist at the new hospital today who has told me that there's nothing wrong with me I've never had arthritis, my doctor found a noudle on my hand and the specialist said you don't get those with arthritis and its a trigger finger. My hands, feet, knee, shoulder and elbows are still painful and swollen, i still suffer with stiffness lasting nearly an hour in the morning, fatigue. After 7 years of being told i have inflammatory arthritis by a specialist and 2 doctors to being told today that i have nothing at all and taken me off the Hydroxychloroquine and Methotrexate. Where do i go from here?


  • YvonneH
    YvonneH Member Posts: 1,076

    Hi @nje16

    Welcome to the online community. I can see you are in a pickle now over who to believe regarding your diagnosis of inflammatory arthritis. You were on methotrexate and hydroxychloroquine and these have now been stopped. It seems you still have pain and swelling in multiple joints, this is, I think, while taking the prescribed meds. You have now been told you don't have inflammatory arthritis.

    I'm sharing with you the information on our website about managing your symptoms which will help now you are no longer taking the meds prescribed earlier. I particularly like the section on emotional wellbeing.

    You can go back to your GP and ask for a second opinion. I have done this on a matter unrelated to my arthritis but it was quite quick and really helpful, I didn't at all feel like I was wasting anyone time or being a nuiscence. In the mean time you can also ask your GP for pain relief - over the counter meds are fine for some but there are stronger versions if you feel you need them.

    Once you have taken any action you feel necessary then do try to relax and not stress while you are waiting for answers, It is really hard but it won't help with pain or other symptoms.

    I really feel for you, sending you some very gentle ((((())))) (virtual hugs)

    Yvonne x

  • Hi @nje16, thank you for sharing your experiences, that sounds like a stressful situation to be in, but I’m glad you’ve reached out to get some advice on our forum here.

    To start with, I can see our forum member @YvonneH has given you some great advice, and I’d agree that a good starting point would be to speak with your GP to seek a second opinion. It’s important to keep your GP in the loop as they can still assist you with symptom management, and they should be able to refer you to a different rheumatologist who can perform some independent investigations and hopefully shed some light on what your diagnosis might be. It sounds like you’re still experiencing lots of painful, swollen joints, and it’s important that you get a diagnosis for what is causing this.

    You could also speak to your hospital's Patient Advice and Liaison service (PALS) who can give you some more advice on the NHS process for seeking a second opinion, and I’ve included a link to where to can search for your local PALS team below.

    Before you go to the appointment, it can be a good idea to keep a symptom diary for a couple of weeks as this can be a very useful tool for the GP and rheumatologist to see how your symptoms present.

    Do keep in mind that you are always welcome to call us on the helpline too, if you ever need a chat with someone about your experiences, as I imagine this must be quite a stressful time for you. As @YvonneH said, do look after yourself and find moments to relax if you can. 

    My best wishes, Jack - Helpline Advisor

  • nje16
    nje16 Member Posts: 3

    Thank you both so much for your help and advice. My doctor is calling me tomorrow regarding on where I go from here as she’s shown all of my medical history and she herself found it odd that for the past 7 years I’ve been on meds for RA but new rheumatologist is now saying I never had it. My hands, feet and hips are quite painful and the fatigue and memory fog seems to be getting worse. I will have a look through the information Yvonne enclosed. Thanks again it’s much appreciated (((gentle hugs)))