Awaiting diagnosis

[Sj1966]

I am new to this site and joined as I have been informed I might have lupus and still undergoing tests. I am worried about my diagnosis and this site has provided me with some useful information.

[EOLHPC]

Hello Sj, and welcome

Am very glad you've found our wonderful forum...and that the info here is already helping you. This forum has made all the diff during the 6 years since the diagnosis & treatment process began for me....thank goodness for Lupus UK and all the vvvv lovely & special people here

wishing you every best wish

🍀🍀🍀🍀 coco

[Sj1966 in reply to EOLHPC]

Thanks 😃

[whisperit]

Welcome Sj1966,

Good to hear from you. Keep us posted with how things go for you x

[Lupiknits]

Hello and welcome. This site is just brilliant!

[misty14]

Welcome sh and good luck for your diagnosis. Glad forum has helped you, it's been a lifeline to me too. Let us know how you get on. X

[Paul_Howard Partner LUPUS UK]

Hi Sj1966 ,

Welcome to the site. I am glad to hear that you have found lots of helpful information on here so far. Good luck with your journey to diagnosis. Please keep us updated with how you are getting on.

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...

[Sj1966 in reply to Paul_Howard]

Can I please ask is the face rash always a sign or not because I don't have a rash but do have other symptoms?

[Paul_Howard Partner LUPUS UK in reply to Sj1966]

Hi Sj1966 ,

Whilst the malar 'butterfly' rash is distinctive and commonly associated with lupus, only around 30-50% of people with lupus will develop this facial rash. The rash also tends to be intermittent, so will come and go over time (often in line with disease activity or exposure to UV light).

[Sj1966 in reply to Paul_Howard]

Thanks that's a huge help 😊

[Sj1966]

Ok seen the doctor and he has been dismissive of my symptoms and discharged me so going for a second opinion because he has stated my bloods state lupus but he just said because I don't have the facial rash I only have fibromyalgia I'm not really happy can I ask for any advice pleases

[Paul_Howard Partner LUPUS UK in reply to Sj1966]

Hi Sj1966 ,

A diagnosis of lupus should not be excluded just because you don't have a facial malar rash. Only around a third of people with SLE develop the malar 'butterfly' rash.

I would definitely recommend you seek a second opinion, preferably with a consultant who has a specialist interest in lupus. If you let me know what area you live in I can let you know about any lupus specialists we know nearby.

[Sj1966 in reply to Paul_Howard]

I live in Oldham near Manchester and thanks for getting back to me so soon

[Paul_Howard Partner LUPUS UK in reply to Sj1966]

Hi Sj1966 ,

The Kellgren Centre for Rheumatology at Manchester Royal Infirmary is a LUPUS UK Centre of Excellence and would be your nearest specialist centre. You can learn more about it at lupusuk.org.uk/centres-of-e...

[Sj1966 in reply to Paul_Howard]

Thanks Paul

[baba]

This from google:

Rheumatology - Manchester Royal Infirmary - NHS Choices

nhs.uk › Service › DefaultView

13 Oct 2014 - The Kellgren Centre for Rheumatology, based in Manchester Royal ... such as systemic lupus erythematosus (we are a Lupus UK Centre of ...

Rating

3.5

(258)

Prof Ian Bruce MD FRCP | The University of Manchester

manchester.ac.uk › research › ian

LUPUS UK Centres of Excellence - LUPUS UK

lupusuk.org.uk › centres-of-excelle...

[Sj1966 in reply to baba]

Thanks baba