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How hard do I push for a diagnosis?

cemccemc Posts: 3
I feel like I have been through the mill with what I call NHS speedmedicine (like speed dating - you get 5 minutes to make an assessment then move on to the next person). I have seen a lot of different doctors - but each one has just looked at one tiny part of what feels like a systemic problem, done rather random tests and then referred me back to GP. I have a huge family history of all sorts of autoimmune disorders including RA, AS, crohns, thyroid, coeliac, and have been diagnosed coeliac disease. I am seronegative for the usual rheumatology blood tests, including all the extra tests for lupus (done because of a classic malar rash). Biggest problems have always been where muscle joins onto bone, down spine, sacroiliac joints, ribs. Major lower back muscle spasms +bladder problems led to neuro referral and when it wasn't neuro I got told variously somatization disorder, CFS, fibromyalgia, and chronic pain syndrome. My cousin has AS, my father and brother have similar problems to me (undiagnosed), I now have pretty much zero chest expansion and can barely touch my knees when I bend over. My SI xrays show some sclerosis (very vague report though) but GP says its not enough to explain my pain. NSAIDS relieve things, but not enough now. I'm in my 50's and female, but have had back and SI problems since I was in my teens. I am also getting increasing gastro. problems not related to the coeliac disease.

Do I just accept fibromyalgia, take NSAIDS and grin and bear it? Or do I push a bit harder to get to see a rheumatologist again, bearing in mind the first time I saw one it was on referral from dermatology with ?lupus (Rheum. said not systemic on basis of blood tests). Second time I saw NHS rheum. it was with a file full of psychological reasons for all my problems and he only gave a cursory exam and sent me back to GP.


  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I have PA, psoriatic arthritis, which is a sero-negative form of the disease. Given the family history I think you really should push for further tests/appointments, or even, if possible, see someone privately - at least then you should be granted the courtesy of time being devoted to you. It took nine years for me to be diagnosed, and I had five years fo that time without any form of medication: I think you have to keep trying. It may be worth ringing the helpline (number at the top of the page) - they have all sorts of info and booklets at their fingertips, they could have something relevant to your situation. Standards vary so widely throughout the country in terms of listening/diagnosis/treatment: it shouldn't be a lottery but sometimes it is. I wish you well. DD (forum member)
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • helpline_teamhelpline_team Posts: 1,964
    edited 30. Nov -1, 00:00
    Dear cemc

    Thank you for your posting.

    I’m sorry to hear about the difficulties you are experiencing and the fact you have seen a lot of doctors and feel like you have been through the mill.

    It may be worth pushing to see a rheumatologist again, because if you have fibromyalgia, there are different medications (other than NSAID’s) that can help with the condition. See our factsheet on Fibromyalgia at http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets#cK45 and our booklet on ‘Coping with pain’ at http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets.

    I hope this helps.

    Please ring our helplines on 0808 800 4050 if you would like to have a chat about your situation, or need more information.


  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    If I were you, I'd push hard. This is your life and your health after all. As dreamdaisy said, would a private appt be an option for you? I'm not sure if you've seen a rheumatologist yet. If you have, you are entitled to a 2nd opinion. I've just requested one because I'm unhappy with my currently consultant and got an appt through pretty quickly.

    All the best of luck.
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Oh cemc I so understand your frustration with the lack of "joined up" thinking in the NHS. I have spent the best part of the past 3 years being pushed from pillar to post in the NHS and from consultant to consultant who did, just as you said, and looked only at symptoms which were relevant to their particular specialism. And the silly thing was that I knew all along what was wrong with me but no-one would listen (I was right as it turned out!).

    As the others have said, I do think you should push very hard to see another rheumatologist. Hopefully, because many rheumatology type diseases are, by their very nature systemic, you will find a rheumatologist who will look at the whole picture this time.

    Good luck.

    Love Tilly xxx
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