Update on my rheumatologist appointment

Hi all hope everyone is ok.

Had my first rheumatologist appointment yesterday and to be honest don't know what to make of it.

She asked me what symptoms I got so managed to explain half of them but before I could tell her all of them she asked what medication I was on soon as I said I was on medication for anxiety she said that she thinks I've got fibromyalgia she's took bloods to test for sjogrens but said she don't think I have that and completely dismissed lupus as soon as I asked about that.

She requested an ana ds DNA antibodies screen and esr would lupus show up in any of these tests at all?

She's also checking my thyroid again vitamin d level as I'm on medication for that and iron.

She said I would know results in two weeks time just feel like I'm being fobed off cause I suffer with anxiety

Thanks for listening xxx

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  • Hey! I have anxiety as well and the same thing happened at my last appointment. I wish I hadnt mentioned it just to see. I know anxiety can cause all sorts of symptoms , but people with anxiety can and do still get ill! I had an ANA test and waiting on results. I`m convinced I have some sort of autoimmune disease so im hoping it actually is anxiety.

  • Lupus us hard to diagnose. Keep track of all your symptoms . Make them listen, remember medicine is a practice.

  • The tests you've had are fairly comprehensive and include specific Lupus ones so you will soon hopefully get some clarity. If all are negative then it's very unlikely that you have Sjogrens or Lupus now - but not impossible.

    Anxiety and fatigue can both be symptoms of these diseases, as with Fibro and ME. So it's hard to know which comes first without looking at supporting bloodwork. Sjogrens often causes Fibro or ME symptoms secondary to the disease process - as do Lupus and RA for some - but this tends to show up in other ways such as skin and early organ or joint involvement, whereas more with Sjogrens have it for years without either.

    RA can also show up as flu like symptoms and generalised pain long before it kicks in fully so please don't despair if nothing shows up in your blood yet. Just keep badgering your doctors for regular checks in case anything changes that reflects autoimmunity - as connective tissue diseases can show up in bloods years after symptoms present

  • Thank you for your replys.

    Find them very helpful it is very frustrating trying to get answers.

    It's taken me 3 years to get a doctor to listen to me but have had symptoms for as long as I can remember

    Many thanks emma 🙂

  • Hello ems

    Your experience is not that uncommon in fact probably the opposite. However I think the tests show that you are being properly investigated and also that lupus is being checked on. The anti ds DNA is a very lupus specific test so it hasn't been ruled out altogether.

    However much her bedside manner may be lacking I don't think you have been fobbed off. My GP is great in hundreds of ways and we get on well but when it comes to describing symptoms I lose her attention in about thirty seconds. She wants them quick and no detail whereas I still make the mistake of thinking I really need to explain.😃

    Good luck.

  • Hi Ems666,

    Sorry that you were left a bit confused after coming out of your appointment. As other members of the community have stated, the tests that you have mentioned (especially dsDNA antibodies) are used in the diagnosis of lupus. You can read more about these tests and others used in the diagnosis of lupus at lupusuk.org.uk/wp-content/u...

    Let us know how you get on with the results. Make sure you are prepared when you go back for your next appointment. We have an article about getting the most from your medical appointments which you may find helpful - lupusuk.org.uk/getting-the-...

  • Yes. It does sound like she's doing her job - but just leaping right into the anxiety and fibromyalgia sphere - to my mind a kind of discrimination. You have every right to be anxious when you're unwell and looking for an answer. No medical conclusions or labels should be drawn from what is a natural emotional reaction to your situation.

    I've had SLE for close to 40 years now and have absolutely no room for magical assumptions regarding my mental state from Doctors who are in no way qualified or particularly insightful in this area. For me its always been an obstacle to timely treatment.

    Recently I just had to grit my teeth and dump a very high standard and quite caring Specialist - because - instead of concentrating on some pretty awful new symptoms he concluded the problems were psychological.

    Yes....Of course I was distressed and a little warped.......but this was precisely because I wasn't been taken seriously. And of course this amateur psychology was put in a letter to my GP who also stopped trying to find an answer also.

    One visit to another (literally self refereed) specialist - and I had some medications re- arranged and found out my spleen was not very happy. Feeling a lot better.

    My - deranged advice would be to see this Rheumatologist to find out your pathology results and if her attitude towards your anxiety hasn't changed significantly - find another specialist.

  • Hi all thank you for your replys it's nice to talk to people going through similar situations and getting feed back from you all

    Thank you and will keep you posted when I get results back 😊

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