I am sick of doctors looking at me like Im some kind of hypochondriac and dismissing all of my symptoms, telling me there is nothing wrong with me when quite clearly there is.
My only assumption is that I just haven’t found the right consultant yet, someone who has an actual working knowledge of lupus and a passion for helping people and not just undermining them as soon as they walk through the door.
I have almost all of the textbook symptoms, positive ANA and ANTI DSNA blood tests so why is no one giving me the diagnosis I need ?
I am based in Birmingham, UK.
I am willing to travel anywhere within the UK to get my answer, please someone help me with a recommendation to a genuine doctor. Money is no issue.
Thank you in advance.
Written by
SadGirlRaceClub
To view profiles and participate in discussions please or .
I would to go to the London Lupus Centre at London Bridge Hospital for a second opinion. This will be a private appointment but you will be given lots of time. If you take some of your blood test results and scans with you you are unlikely to need any further tests but will probably be given a physical exam.
I see Dr Arvind Kaul at the London Lupus Centre. He is a fantastic doctor and very understanding. He is good a looking at complex cases. You will be able to read the bios of all the consultants working there on the London Lupus Centre website.
With any luck you should be able to get an appointment fairly soon. Do pm me if you want any more details. I got Dr Kaul's name after reading posts in this site nearly 4 years ago. I travel 250 miles to see him but it is definitely worth it!
I’m really sorry to hear what you are going through to get a diagnosis and treatment for your symptoms. Unfortunately this is not unusual. I agree with PB. I see Dr Kaul at London Lupus Centre. Off the top of my head he’s around £240/250 for 1st appointment which is an hour long. However he doesn’t let you leave until you’ve raised all your issues, so does tend to run late. He is excellent. Been seeing him for nearly 5 years. I’ll respond more later. Best wishes.
May I ask how you got into contact with Dr Kaul? Do you ring his practice directly or would I have to go through Bupa care ? I don’t have any private health insurance but as I say I don’t mind paying
I know you asked Wendy this but in case she does not see your reply I will answer -i hope Wendy dies not mind! It was from Wendy's posts that I first heard of Dr Kaul.
You phone The London Lupus Centre and the reception staff and ask for an appointment with Dr Kaul. Tel 02072342155. In addition if you Google London Lupus Centre the website will come up and you can read about the Centre and all the consultants who work there.
As you have some positive blood tests and are currently under the care of an NHS rheumatologist the London Lupus Centre probably will not need a GP referral although if you were insured your insurer might ask for one.
When you make the appointment you can say you are self paying and not insured and ask if you should send ahead any information or blood test results etc for your file.
My rheumatologist is Dr Emma Derrett-Smith at the Birmingham QE, Selly oak and she is wonderful to me. It took 10 years for me to be diagnosed and Dr Derrett-Smith was the one who diagnosed and has treated me since. If you get to see her, write a list of symptoms so you don't forget anything. I wish you all the best.
My hubby is due to see Dr Hala Sadik at Spire, Warrington later this week. He had got nowhere with getting a diagnosis with the NHS, being told he would have to wait 18 months for an appointment just to assess him. He too has had positive blood results. We chose this doctor as lupus is one of her specialisms. We're keeping our fingers crossed that all goes well and I'll post on here to let you know.
I am so sorry to hear about how you have been treated, it’s unfortunate that so many with Lupus and other autoimmune conditions have to go through this.
Like ‘Pb’ I found Dr Arvind Kaul at the London Lupus centre at London Bridge after difficult experiences with the NHS.
It’s obviously private but I agree completely worth it!!! He not only did a thorough examination, he is extremely understanding and supportive, he really listens and takes you seriously.
He is also a leader in the field of Lupus.
Since my initial appointments I can now see him on the NHS as he isn’t too far from me. In time, it may be that you can move to a different Lupus centre more locally once you have seen him.
Wherever you decide to go I hope you find the support you need, hang in there and keep going until you get the answers.
I would highly recommend Prof David D'Cruz at the London Bridge Hosp. He is outstanding. He is calm, patient and like a super detective! The first thing he said to me was 'Tell me everything, absolutely everything'. How often do you hear that from a doc?
He is exceptionally busy, in high demand, but ring his secretaries, they are really lovely and accommodating and they'll be able to get you booked in. They told me he likes information and advised I bring notes, history, photos, any info that will aid his diagnosis. As I said, like a detective, which is exactly what you need to be with these AI conditions.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How long was your initial appointment with Lupus specialist?
SEASON’S GREETINGS from LUPUS UK
👋👋👋👋BIG thank you to Lupus UK...
London lupus specialist 
