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Confused about diagnosis

firestarfirestar Posts: 44
I have been having problems for a couple of years and was told in July I have sero-negative spondyloarthropathy possible psoriatic arthritis as I have some nail changes but no psoriasis. I am in a lot of pain and currently not able to work. I have not had any raised ESR/CRP (which I was told can happen in inflammatory arthritis) and the MRI showed some signs on my hand and historical inflammation of my sacroiliac joint. The rheumatologist prescribed sulfasalazine which I have been on for 3 months and was told to come back after 4months.
Up to this point I had been seen 3 times each time with about a 3 month gap and really felt overwhelmed by the diagnosis and lack of support.

At my last physio appointment I burst into tears (very unlike me) as it felt all too much with the mix of pain etc. and the side effects of the medication. The physio arranged for me to be seen sooner by a rheumatologist (it was a different doctor) and now feel even more confused. The appointment was mostly me asking a few questions and seeking a bit of reassurance about taking the medication and having no benefit just side effects. He arranged for some more blood test, said stay on the sulfasalazine and said come back in 6 months.
Today I received a copy of his letter to the GP which had a ? next to the diagnosis (?sero-negative arthritis ?psoriatic arthritis). Now I am worried and feel like they don't think it is inflammatory arthritis.

Is it usual for them to not know the diagnosis at this point? They seem really busy and not particularly interested in the fact I am off work and struggling to function. And 6 months until the next appointment seems a very long time. Should I be expecting more from my consultant?
I have tried to call his secretary to ask what the letter means but have left 2 messages and had no reply yet.

I would have gone to speak to my GP but she has just gone on maternity leave and I don't much feel like trying to explain it all to a locum GP.

Sorry this is so long but not sure what to do or who to turn to. I feel like I am getting a bad service from my rheumatology doctor but not sure if this is typical or not?

Any help gratefully received.

Comments

  • helpline_teamhelpline_team Posts: 2,019
    edited 30. Nov -1, 00:00
    Dear Firestar,

    Thank you for your post to Helplines. This sounds like a difficult time for you. Having a hard to diagnose suspected inflammatory arthritis is not an easy situation. The sero negative family (or spondyloarthropathy to give them their up to date name) can be tricky to pin down when lots of markers that the specialists may use to monitor things may be not showing much.

    I think it can help to get as much concrete information as possible. E.G. what raised blood levels have they seen in your case? And maybe what are the numbers and have they explained what yours show compared to the norms?

    You may find that everything is still opaque, but having as much information as possible may be useful. If you do have raised inflammation has it come down at all since being on your medications. and by how much?

    These are conversations that you'd ideally have in appointments you might request with the rheumatology nurse /or rheumatology doctors. If you can't see them or things are somehow tricky I'd encourage you to ring us for some support, or perhaps use the peer support on living with arthritis forum if you prefer.

    I'm attaching a link to our factsheets so you can see the information on spondyloarthropathies. http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets

    I really appreciate that there is a lot you've mentioned. It may not be possible to do all that justice in one reply. I'm hoping that you might be able to lean on us for some ideas/support and that the folks on the forum may be able to come in and support too.

    Kind regards

    Guy
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, it seems as though you are under a very busy rheumy hospital. Usually you can speak to the rheumy nurse for advice in between appts. The ? next to your diagnosis means query, so they are not 100% sure of your diagnosis. This is really common with inflammatory arthritis as there are so many types. The thing to focus on is the treatment, which you are getting.

    However if you feel it is not working then contact your rheumy nurse for more advice. Is it possible you are flaring? The meds can take up to 6 months to take full effect and it is a trial and error basis in getting meds sorted.

    I am just a forum member, but post on the Living with Arthritis forum and you will meet some lovely people who will try and help answer your questions and offer support.

    Take care
  • firestarfirestar Posts: 44
    edited 30. Nov -1, 00:00
    Thank you to both of you.
    I called the consultants secretary and she has booked me in to see someone at the end of the month- so hopefully things will be explained.
    The bloods seem within normal range which I think makes it harder and minimal signs on scans/xray but my symptoms fit and I guess I would find it easier having a clear name for the problem rather than feeling like it is all up in the air.
    I will have a look on the other forum too.
    I've always been a been a bit shy about forums but this has given me more confidence to draw on this very helpful resource.
    :)
  • Deb123Deb123 Posts: 19
    edited 30. Nov -1, 00:00
    Hi firestar,

    Reading your post was so familiar to how I feel about the care I have received. Follow up appoints are so far apart, and I too feel left to just get on with it ! I think they are so busy and see so many patients that they lose their compassion.

    Keep coming on the forum and having a chat or just read other posts as many are so like what you may be going through. :D

    I had my first diagnosis in May this year, so am still learning and coming to terms with everything.

    Take care xxx
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