Appointment at last!

Hi Everyone, I hope you are feeling as well as possible. I finally have an appointment with the Rheumy at Hillingdon Hospital. They have managed to arrange it for my wedding anniversary! They said they could change it but I said NO! i'll keep it as is. So far over a year, firstly on NHS with mysterious aches and pains and lumps and bumps. Lots of x-rays, ultrasounds and a MRI. Eventually went private to a Rheumatologist. Two weeks later diagnosis of RA, with a CRP of 7mg/l and Anti-CCP of 311 IU/L.

Back to GP for referral to hosital for treatment. Fianlly 10 weeks later I have an appointment.

Anyone have any idea what I can expect?

Are they going to accept the diagnosis or, as I suspect, do the blood tests over again to confirm?

Any help and advice much appreciated.

Keep well.

Richard

9 Replies

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  • Sorry to read about your diagnosis. I'm also under the Hillingdon hosp team although I go to Mount Vernon more as it is a little bit nearer but with the same rheumatology team.There are quite a long wait for appointments so you are wise not to change it! I am certain they will accept the diagnosis after such a thorough going over but will probably do their own tests too and might want to take more x-rays.They will be asking lots of questions.Be prepared for a lot of to-ing and fro-ing for your first appointment.

    Elizabeth

  • I think they will do all the tests again. Its so frustrating going through what you've gone through just to get where you are now. You go private and get diagnosed and then back on the nhs and then the waiting is forever.

    hope you get on ok.

    sylvi.xx

  • I don't see why they would need to do the tests again Richard. If you take print outs of your blood results so they can see it in black and white and tell them how long you waited and why you went private then they can look at them decide what to do.

    Test results are test results I would have thought? Tell them how long you've waited and I would hope they would just accept t he private rheumy's diagnosis on the basis of these results which are fairly clear cut to me. The anti-ccp one can take a long time. I hope you've got print outs of them to take with you and give them so they can see which lab took them and which private rheumy you saw perhaps? Good luck. Tilda xx

  • Hi I followed a similar path to you & was first seen & diagnosed by my consultant privately, I then moved over to the NHS staying with the same consultant, all my results & X-rays followed my over to the NHS.

    Good luck I hope the appt goes well

    Clare x

  • I started off in the private sector but once I was diagnosed I went back to the NHS. Before my first appointment I got another set of bloods done so they were up to date. My diagnosis was accepted, I was examined, given a prescription for Hydroxy and that was that. Another appointment in 3 months.

    Hope it is just as simple for you too!

    Carole x

  • Hi RichardL60

    I am glad to hear of your upcoming appointment with the rheumatologist, and I'm sure reading about the experiences of others on here has been very helpful. You may also find it useful to read our article 'The Patient Journey - Initial Hospital Consultation' which can be found on the NRAS website: nras.org.uk/about_rheumatoi...

    As you have already had blood tests taken, and been diagnosed privately, your experiences obviously may differ slightly but this will hopefully give you a better idea of what to expect. I hope the appointment goes well.

    Kind regards

    Sarah Kate

    NRAS Helpline

  • Hi Richard

    I was looking at NHS options and came across you, I'm thinking of a referal to either Hillingdon or Northwick Park (live in Ruislip) I was diagnosed with agreesive RA privately in Jan 2012 but think the time is right to get refered to the NHS. What do you think of Hillingdon and how is it going for you one year on?

    Ronnie

  • Hi Ronnie, I went to Hillingdon as it is, literally, half a mile away from home. I don't have much to compare it with as I not been anywhere else. However as an example the last time I was there the Dr said I will ask for your next apt in 4 months, that will mean 6 months and that would be about right, the appointment came, eventually, for 8 months, no figure!!

    I have heard that Northwick Park is much better organised, although I can't remember where I heard it. Given the choice again I would probably go for Northwick Park.

    I have been on 7.5 MTX for a few months now + folic acid. Initially things were going very well. After a very cold days playing golf in January I seem to have developed what feels like various sites of capsulitis. Went to local GP and first give co-codrymol, which seemed to make me feel worse! Went back again and he suggested Naproxen, this worked albeit temporarily, it does interact with MTX apparently. I told GP that my previous episodes of capsulitis had been fixed with steroid injections and did he think I could go on a course of steroid tablets. GP said he cant do that only the hospital can?! So now its manage as best I can and wait for my appointment at end of July.

    I have seen the RA support group advertised in Hillingdon, but I haven't been along yet. As I have a mild RA (as yet) I do feel a bit of a fraud when lots of people have it a lot worse that I do and it is not clearly apparent to most people that I have RA.

    Hope this ramble helps. Let me (us) know how you get on.

    Regards

    Richard

  • Hi Richard

    Thanks for this, that's really helpful

    I'm seeing my GP on Thursday to discuss the referral and will opt for Northwick Park. Will let you know how soon I get an appointment. I might try the next support group and see what it's like, nothing ventured and all that..........

    Regards

    Ronnie

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