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Lost and full of questions

Hi everyone I come here for the 1st time I’m a 28 years old woman who was diagnosed with AS in france in 2011 I don’t have hlb-27 or show any inflammation in my blood test but I was diagnosed with contrast MRI.

Flare up were bad (couldn’t do anything on my own) tried all kind of medication but nothing helped until I started Humira which helped me a lot I was on it for about 4 years before doctors decided to see if I could still be okay without it. I’m really glad to say that I was fine without it and with only ibuprofen to help with the flare up (that were painful but really manageable)
I then moved to England (I’m french) and since I was fine decided (silly I know) to stop seeing doctors since I could manage it on my own and live a normal life for the first time since my back pain started.

In 2020 flares up came back more often and I couldn’t handle the pain on my own decided to get a referral from gp to be treated again by a rheumatologist. Had to wait 8 months for an appointment which was really tricky the pain was really bad... but got my appointment,(MRI, X-rays and blood test done prior to appointment) doctor offered to put me on Humira again which i agreed to and gave me something to help me with night pain and etoricoxib.

And I just found out in the report letter that the doctor « don’t see any evidence of AS in MRI in his opinion » which wouldn’t be so bad if he told me honestly what he thought but I had to find out in the letter.

In this lovely letter he also states that « I demanded Humira » which I did not he was the one who offered it 3 minutes after I walked in the room (more like limped in the room), that letter also states that he prescribed the pain killers to help for my night pain, which I did not talked about before he told me he was gonna prescribe me with this medication...

I am lost, the wording of this letter makes me someone who demands medication which I did not do (even if I admit I needed medication and would have asked for it if the DR didn’t offer) and to see a doctor doubting previous diagnosis without offering his opinion on an alternative diagnosis is disconcerting ...

Especially since this doctor didn’t even give me any exam of any kind and throw away years of MRI done in France with 1 imaging in England.
When he saw me he never asked me when the pain started, how long have I been like that or what joints were affected by this flare up... nothing.

I am lost, and not use to this kind of care, all the doctors I had and I’ve seen plenty were always asking basic questions about pain pattern flare up, were giving a thorough exam and then we would talk medication, therapy ... but not before a proper talk and proper examination but not this one...

Am I overreacting? Should I just let go the wording of the letter and the fact the doctor doesn’t even tell me honestly face to face his medical opinion? Is this regular in the UK and I’m just not used to it?
What would you do?

  1. Hi Laetitia. I agree with the advice of others here. What a horrible experience for you. You can also contact PALS the NHS complaints department. Here is the link, should you wish to take things further.
    I hope you are at least feeling a little better now.
    https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
    PS - I don;t believe you are overeacting. It sounds to me as if you weren't treated very well at all.
    Take care
    Steve (Community Advocate)

    1. I agree with Vivian, I would find a different rheumatologist. rick (us here) - Moderator

      1. Hi , If I were you, I would go to see another doctor. There is a universal code of conduct for doctors, no matter in UK, in France or In Australia. Integrity is the essential one. If you feels not right, please follow your gut and get a second opinion from a different doctor or specialist. My first specialist did nothing but gave me the same script every three months without really checking my blood test results, asking questions of any changes on my symptoms, or ,checking if the medication was still appropriate. I then changed to another specialist which is the current one. She is caring and loving, and very professional.
        So please do get another doctor to examine. It would give you an assurance.

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