First appointment with Rheumatologist, and have j... - LUPUS UK

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First appointment with Rheumatologist, and have jitters!

Angi21 profile image
2 Replies

Hi, I'm due to see the rheumatologist at a UHMBT hospital in the next week. I am slightly apprehensive about my appointment. The referral comes after I had a stillbirth at 38 weeks in 2015, and a miscarriage last year, at 12 wks. I am utterly exhausted all the time, I have the sensitivity to sunlight and have had Reynaud's for years, pain and swelling in my joints and memory problems. I am just wondering whether anyone on here has experience with Rheumatologists within UHMB Trust. A lot of posts on here saying how people felt completely dismissed by the consultants, and I would hate for this to be the case. I just want an answer to why I feel so awful, and keep losing my babies. Thanks in advance.

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Angi21 profile image
Angi21
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2 Replies

I had to look up UHMBT hospital and this doesn't mean much to me I'm afraid - I live in Scotland. But I know rheumatologists vary hugely everywhere in their approach and people skills. However you are obviously going to be extra vulnerable after your losses so I hope you get one who is particularly gentle and kind.

I would say that it's very important that your rheumatologist tests you for Hughes Syndrome or APS - which could be causing the problem with your miscarrying. Hughes is often linked to autoimmune thyroid disease, Lupus and Sjögren's. So if the rheumatologist can identify which you have (and with Hughes, Hashimoto's Hypothyroidism often goes hand in hand with Sjögren's as well as Lupus) then perhaps you will get treatment that can help you at last. This is what I would try to get them to focus on. And take an A4 bullet point list with all your symptoms including your losses so they can start piecing together the jigsaw hopefully. Also photos of rashes and swollen joints are helpful in case they don't obligingly show on the day on the day.

Best of luck and let us know how it went. You might have to wait a while for blood tests for Hughes and other autoantibodies to come back though so patience will be required too I'm guessing.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Angi21 ,

Good luck with your appointment. I'm afraid I don't know of anybody who has experience of the rheumatologists at UHMBT, but if you are on Facebook, you could join our North West Lupus Group's group on their and ask around? You can join at facebook.com/groups/nwlupus

If you need any tips about preparing for your appointment, you may be interested in reading our article here - lupusuk.org.uk/getting-the-...

If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

Let us know how you get on.

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