What should I expect?

[whiteyswifey]

I am due to see rheumatologist for first time in Feb. Having read through lots of helpful advice from previous posts I have been keeping a daily diary of symptoms to take with my along with some photos of 'butterfly rash'.

I have no idea what to expect (except being fobbed off as I have been by GP for years)

Any advice or tips anyone??

What would a positive appointment look like?

Feeling nervous already

[KayHimm]

I ran across an excellent interview with a rheumatologist the other day in which she talks compassionately about her patients, the difficulty of diagnosis and recommendations for a first consultation. Google: UNC, Lupus, Dr. Saira Sheikh. I hope this is helpful. And good luck.

[whiteyswifey in reply to KayHimm]

Thank you very much kayhimm I will take a look, happy new year

[KayHimm in reply to whiteyswifey]

Happy New Year to you. Let us know how your appointment goes.

[whisperit]

Sounds like you have already done a good job in preparing yourself. For a first appointment, it may help to be aware that the rheumy will have a set assessment protocol, with stereotyped questions and tests like checking for swelling in your joints etc. So it may feel a bit like you are being rushed through without getting much chance to tell your story.

The key thing for me is not to leave before you have d;ear answers to at least these questions:

1. what is your explanation for my symptom X?

2. What is the plan for further management - and who will be the clinician responsible for making that happen?

3. What do I do if I am concerned that things are deteriorating?

Hope it goes well x

[whiteyswifey in reply to whisperit]

Thank you whisperit. Good advice, happy new year

[Barnclown]

Hello whiteyswifey & happy new year!

You’ve got great advice already, so i’ll just give you links to where you can find advice re diagnosis on the Lupus UK website, but you’ve probably found these already:

lupusuk.org.uk/diagnosis/

And here is the LUK publications page, where you can download more info free:

lupusuk.org.uk/publications/

In my case medical history of the recurring & persistent multisystem signs & symptoms + the meds they responded positively to were very very helpful to rheumatology...i prepped by listing these with rough dates of onset from my head to my toes, body system by bodysystem starting with my brain fog & dry eyes etc etc

Hope you’ll let us know how you get on

Good luck 🍀🍀🍀🍀 Coco

[whiteyswifey in reply to Barnclown]

Thank you coco. Happy new year.

I will be sure to update how appointment goes

[Chanpreet_Walia LUPUS UK]

Hi Whiteyswifey,

Before attending your appointment you may like to read our blog article about getting the most from medical appointments at lupusuk.org.uk/getting-the-...

Best of luck for your appointment, let us know how it goes.