Lupus Centre London: Hi everyone, I have been... - LUPUS UK

LUPUS UK

27,283 members23,439 posts

Lupus Centre London

2828
2828

Hi everyone,

I have been fighting a battle with poor health for many years now as no one is prepared to commit themselves to a diagnosis. I feel I have been pushed from pillar to post for so long that I'm beginning to feel that I am a hypochondriac and that I am just wasting everyone's time. I have finally made the decision to go privately and I have heard that The London Lupus Centre is the centre of excellence in this field. I wonder if any of you out there can give me any advice or information. I know it's going to cost a lot of money but I feel it is something I must do as I cannot go on the way I am.

Thanks in advance.

Emma

13 Replies
oldestnewest

The first thing is to not see yourself as hypochondriac. Many illnesses are difficult to diagnose, and doctors know that not being able to diagnose does not mean the person is not sick. Sometimes going to a new doctor with fresh eyes can help, though staying with a set of doctors who see you over time is also helpful. What have you been told so far? Remember to trust yourself!

Hi, Thankyou for your reassuring words. I was initially given an unconfirmed diagnosis of Lupus but then my Consultant Rheumatologist retired. Since then I have been passed from pillar to post until 2014 when I was told that I might have Fibromyalgia. I moved to France three years ago and hoped that the highly respected French health system would get to the bottom of everything. I could not have been more wrong. I have now been told there is absolutely nothing wrong with me. I however know that there is something wrong and I desperately need some answers. Hopefully The London Lupus Centre can do just that. Thanks again. Emma

KayHimm
KayHimm in reply to 2828

It is possible your blood tests were negative when you were tested in France. The best thing to do is get all of your records from the time you were thought to have lupus. You must have had lab work indicating possible lupus. Otherwise, the doctors would not have brought the name up. These lab tests will be essential for your appointment at the lupus center. Good to pursue a second opinion. Wish you best of luck.

2828
2828 in reply to KayHimm

Thankyou.

Thanks for that, incredibly useful advice! xxx

Hi Emma, you are quite definitely not alone, as you will see from posts, and you are not wasting anyone's time. We know when something's up with our bodies.

SLE diagnosis has to be 4 from 11 criteria on Table 5 of the BSR Guideline:

academic.oup.com/rheumatolo...

Worth having a look and see how you match?

That's a really useful reply from Hidden thanks!!! I'll be doing that! xxx

2828
2828 in reply to eekt

Knowing that there others out there in a similar position is very reassuring. Thanks for getting in touch

Many thanks for all the information. It is incredibly useful knowing what I will need to take with me.

Hi, Get your gp to do the bloods before you go (ANA, dsdna, Anti-sm, crp, esr, c3, c4 etc and not just ANA) It will save you around £600. I can personally recommend Dr Kaul who if you have the bloods there is a good chance he will be able to diagnose and prescribe in the first or second session.

Good luck

2828
2828 in reply to jimbo1605

Thankyou for that.

Remember Fibromyalgia should only be diagnosed when all other conditions are ruled out, Lou x

I’ve found LLC very helpful and would recommend Dr Natasha Jordan in particular, she’s very thorough.

Thankyou for the recommendation.

You may also like...