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Discussion Starter · #1 ·
Hi everyone, I wonder if any one can give me some advice. My GP has refered me to St Thomas's lupus centre in London, with the support of my Rheumatologist. The letter (copied to me including last blood screen) simply asks if I could be seen to ensure all that can be done is being done.
Has anyone been to St Thomas's as an out patient? What happens, what can I expect, is there anything I need to do? Im seeing my Rheumatologist 2 weeks before I go and my GP has arranged for me to have full blood screen prior to the appointment so they have an up to date view.
As its such a long way I am staying in London overnight, so its quite a costly thing to do hence me wanting to make the most of it; dont want to waste their time or mine.
Any advice would be VERY much appreciated. Thanks :)
 

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Sorry.No advice to give as not been in that position but just wishing you well for your appointment and glad that they sorting you out with all the expert help they will have. Have heard they are excellent. Good luck and I hope you well enough when you go to have some good times while you are in the big city! Let me know how you get on.
 

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Hi,

Good luck with your appointment!

To be honest they will probably run more of their own bloods, even though those past one's will be useful!

Just make sure you take the long list of all problems you have ever suffered and treatments issued, photos, family history, wear decent underwear, remove nailpolish and all make-up!

Did you book your accomodation via St. Thoms...much cheaper (if not free at times), and close by (sometimes on site)... may not be the Hilton, but comfy and then perhaps be able to treat yourself with money saved for a nice relaxing meal! There is information on the website as to which no's you can call for accomodation or if you cant find thsoe just phone the appointments desk at St Thoms or Lupus Clinic and they will give you no's!

GOOD LUCK!
 

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Discussion Starter · #4 ·
Thanks LadyH and Lesley. I hope I feel well enough to enjoy the Smoke' for the day. Thanks for your advice and tips - if you hear anything more then please let me know. K:)
 

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Pollianna
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Hi, yea much the same answers from me. They will run their own bloods after yr appointment with the consultant.

You go in first, nurse takes BP..Weighs you, urin sample. You could have up to a 2 hr wait to see the consultant when you sit there so be prepared. Your consultant will strip you to yr bra and undies and check every inch of yr skin....You will be asked when yr symptoms first started and the consultant will try and get a timeline of your symptoms....

Whatever you do do not think that anyhting is irrelivant no matter how daft the symptom sounds or how unconnected to anyhting it may seem....Tell the consultant everythig that feels abnormal to you....

After the consultant is done with you you will go across the walkway to the main building blood test bit and have the bloods done......it's a long day but boy is it worth it,

Best of luck, hope this helped :hug:
 

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Discussion Starter · #6 ·
Thanks Pollyanna, very much appreciated - so is it all day job then? My appointment is at 9am, do you think it will be over by lunch time?
Once again many many thanks to you all. :)
 

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Hello Mrssad
I think it is wonderful that you have got this referral for a second opinion.
I think it would be sensible to think of it as taking a whole day because it is quite draining, or at least I find it so!
I have never had to wait two hours but one hour is not uncommon. Allow an hour for the appointment, but getting the blood work done is hard to judge.
Last time I waited 3/4 hour in early afternoon. I think my appointments take about 3.5 hours all told, including getting meds from the pharmacy but I do have to get myself there and back by public transport. I leave home at 10.30 and expect to be back by 4.30. So with a bit of luck you should be out by late lunch time. I'm talking about the Louise Coote Lupus Unit by the way, I dont know about any other departments.

( By the way, you do take your clothes off by yourself ! :hehe:)

:)
Clare
 

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Pollianna
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Maybe 9 is a good time/better time. My appt is always around 10 so it gives the doc time to run late lol. You will be able to make the train ok.....

Best of luck with it :hug:
 

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Hi

Just wondered how the appointment went? I'm going to try to be referred there and would like to know what to expect. Did your specialist take the time to go through everything with you, and did you feel it was beneficial?
 

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Duncan
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Hi,
In my experience St Thomas sees you at the appointment time. You'll be asked for a urine sample every time and weighed. If you have a blood test there I've waited a maximum of 40 minutes, often only a few minutes. Getting meds can take some time, maybe an hour.

They got me much better and when there's a problem with my bloods that my GP takes he faxes St Thomas and they call me right away to discuss changes to my meds. All very worth the travel there. I see Dr. Cuadrado and she's the first doctor and specialist I've seen who knows anything about Lupus. And I've seen many.

Good luck!
 

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Hi there how did your appt go? I never made it that far on my last appt, as on the day I was to go up there I fell down the stairs at the station near home and was taken to A&E at a different hospital!! I've been once before though and they were very thorough.

Hope all goes well for you.

tutu x
 

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Administrator
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Hi Stacy,

There are 3 hospitals with Lupus Centers that I know of in the US.

Lupus Center Magee Women's Hospital of UPMC in Pittsburg, PA

Brigham and Women's Hospital Lupus Center, in Boston, MA

John Hopkins Rheumatology Subspecialty Clinic Lupus Center in Baltimore, MD

Take care,
Lazylegs
 
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