LupusKaren

Fantastic. Wishing the new Cardiff Lupus Group all the very best at their first meeting and for the future. Great news Paul, thank you for all you do for us as patients.

Paul_HowardAdministrator in reply to LupusKaren

Thanks LupusKaren. We'll certainly let everyone know how it goes. The thanks all goes to Delilah for this meeting. It couldn't have happened without her hard work finding a suitable venue.

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PMRpro

All the very best to all concerned - LupusWales seems to be on a roll!

Wendy39

This is fantastic news!

Good luck Dalila!

I am sure your group will be a great success!

Best Wishes

Wendy

Kevin53

Many thanks to Dalila. Best wishes Kevin

driven

Julian Nash is the best consultant I ever had for SLE. I was gutted when he left for Swansea. He is a great choice of speaker. Well done organisers!! Hope I can be there.

Paul_HowardAdministrator in reply to driven

We're thrilled that he is giving up some of his time to come and join the group, give a presentation and answer some questions. I hope to see you on Saturday

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Tiggywoos

Hi Paul , hope you don’t mind me posting but I was literally going to put a post on the forum to see if anyone ever seen or heard of Julian Nash . I’ve got an appointment Monday and so anxious about it being a pointless trip from Somerset to Cardiff and feeling like I’ve wasted his time

My Gp wouldn’t refer me to Bath (you kindly recommended ) due to it being too far and Bath didn’t take private patients hence seeing Dr Nash. Thank you for reading and I wondered if you feel he will point me in right direction if he doesn’t feel It’s lupus ?

Thanks again

Paul_HowardAdministrator in reply to Tiggywoos

Hi Tiggywoos,

Yes, I know Dr Nash and I believe he was quite a popular consultant when he used to have his NHS clinic in Cardiff. Some of the past members of the group there were under his care. He does have experience with lupus, so I hope your appointment goes well and he can assist in your diagnostic journey.

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Tiggywoos in reply to Paul_Howard

Thank you Paul fingers crossed 🤞

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Smckntsh3 in reply to Tiggywoos

Hi Tiggywoos

May I ask where are you seeing Dr Nash too please. Is this as a private patient & is it for a Lupus diagnosis.

Sorry for all the questions but I am on the same journey & live in Cardiff.

Thanks x

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Tiggywoos in reply to Smckntsh3

Lovely to hear from you ! Ask as many questions as you like ... my story (prob like you yours) is very long . Paul told me about the Bath centre of excellence but my GP said it was too far away . So I literally googled consultants and Julian came up . My insurance company thankfully will pay .

I’m not even sure if I have lupus but NHS in Exeter said I did but then changed their minds 🙄. Very happy for you to private message .. I would you but I don’t know how to do it 😂.

Anything I can do to help please just ask xxxx

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Tiggywoos in reply to Tiggywoos

Sorry ! It’s Spire Cardiff but he also practices in couple of other places I think

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Smckntsh3 in reply to Tiggywoos

Thank you for the speedy response- that’s so helpful. Good luck with your appointment & will you keep us all posted how it goes.

Xx

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Tiggywoos in reply to Smckntsh3

Thank you and I definitely will . So sorry to hear you are struggling ( saw your name in another post) . Take care xx

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Smckntsh3 in reply to Tiggywoos

Sending gentle hugs to you x

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Smckntsh3

I’m currently on meds for lupus & bechets - hydrochoquine & colchicine. But due to neg bloods no definite diagnosis even though I have all the symptoms.

Rheumotology not interested. GP says not qualified enough to diagnose.

So just stuck & getting worse x

Tiggywoos in reply to Smckntsh3

I’m same as you 😔..I wouldn’t have bothered going to another consultant but my husband says I must try to get help . Please do take care xx

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Tiggywoos in reply to Smckntsh3

My GP asked me how to do a referral for Xray on knee 🙄.. you couldn’t make it up !

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Smckntsh3 in reply to Tiggywoos

Oh geez 😳😳

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