[julsie]

Hi All,
Does anyone know of a good dermatologist in the UK who knows about Lupus?thanks,
Julsie

 

[cath]

HI Julsie,

I don't know of one specifically. If I remember correctly, the rheumatologist you saw at St Thomas' reccomended the dermatology appointment right? - can you call her and ask her which one she reccomends? Doctors often develp professional relationships with colleagues and have referal preferences, so someone she knows would be a good idea, even if it meant increased travel time.

All the best,

X C X

 

[julsie]

Hi Cath,
Yes,I could give that a try.I sorely regret not going to have the biopsy done at St.Thomas's now because they do them all the time and know what to look for,maybe I may have had a different answer,
Julsie

 

[cath]

Hi, That was my thought too - at least if you know the expert doing it truly is an expert, then the result is as trustworthy and believable as humanly possible.....

X C X

 

[julsie]

:blink:really?oh,dear,I suppose I will just have to keep trying,
Julsie

 

[Clare.T]

Hello Julsie



I definitely think you should get back to St Thomas' to take up the rheumy's offer. Or contact St John's Institute of Dermatology at St Thomas and see if any of the consultants take private patients and find out what the NHS waiting times are. It is a tertiary centre of referral and it would be easiest if it came from the rheumy at St Thomas. Or from the doctor who admittedly didn't do the biopsy adequately.

Apparently there are only half a dozen dermatologists who specialise in connective tissue diseases in the UK. You are more likely to find one where there is a lupus centre of excellence with multidiscipline teams

One is Dr Simon Meggitt at the Royal Victoria Infirmary Newcastle upon Tyne. I heard him talk at a LupusUK conference and was most impressed by his compassion and understanding of the devastating effects of skin disease I think there's a photo dermatology ( or whatever it's called) unit at Newcastle too. Manchester seems to have good dermatology/lupus services.

I think the phototesting could be very telling in your case and of course expert dermatopathology

You could also contact BAD, the unfortunate acronym of the British Association of Dermatologists. See their website.

Google for contact details.

I might also make an appointment with the London Lupus Centre to get their general take on your situation. There's no reason why you shouldn't explore several avenues at once.

By the way have you got the full biopsy report?
I ask because I did once hear of somebody who took the report to a lupus specialist rheumy at a major hospital after years of footling around in the provinces.When he read it and took her history and all that he had no hesitation in confirming lupus saying it was perfectly obvious and how sorry he was that she had had to go undiagnosed so long because of incompetence. She had no lupus blood work either. She had SCLE like me but had all sorts of lupus related health issues far worse then me although I do technically have the blood work for a formal SLE diagnosis. This was in the USA.

I hope you can get some answers - it's a pity your brother isn't more forthcoming.

Wishing you the very best of luck - you certainly deserve some reward for your persistence

Clare

 

[julsie]

Thanks Clare,that is really helpful.I don't have the full report,a nurse read it off the screen,I have not and never do get any feedback from my G.P so I have made an appointment for next week.
I think my brother just didn't realise how many different types of immune deficiencies there are but he has found a decent G.P who is testing him from scratch.So far,liver enzymes are high but the doctor has just assumed it is from the painkillers he has been taking for years,bit frustrating.Hopefully we will get some answers soon,
Julsie

 

[julsie]

ouch!is all I can say.It doesn't show up as red on the image though,
Julsie