I’m so tired of feeling so rubbish and just being put on a rollercoaster with doctors who just won’t listen
Have you seen a private doctor?
Did they use different methods of diagnosing?
Would you recommend this route? My children need me and I just feel awful most of the time.
Tonight flu like symptoms, runny nose, extreme sweating, burning pains in my feet and that dreaded fatigue 😔
Sorry you feel so rubbish. The route to diagnosis is sadly not an easy one for many of us, especially when you’re feeling so poorly and have children depending on you.
I saw a private rheumatologist at the London Bridge lupus centre and he quickly diagnosed. I said I couldn’t afford all the blood tests etc privately or to see him again privately and he very kindly transferred me to his NHS list st his London hospital and I’ve been seen by that great team ever since. It’s about 2 hours away for me but well worth it.
It depends where you live? If you’ve had trouble getting diagnosed and being listened to I presume you do not have the ‘typical’ lupus blood results? (which many of us don’t!). If so you need a lupus specialist. Paul from lupus uk will probably come on here on Monday and give you specialists near you. You can ask your GP to refer you wherever and to whoever you like, just takes a bit longer on the NHS. Getting the right person really is key though.
Good luck, hopefully they’ll find what’s wrong and help you get better
X
Thank you for this extremely useful reply .
I’m not far from London , so this is perfect.
I do not have a positive blood test for anything , but display many symptoms which to be honest is quite frustrating.
I really need some respite from it, that is all 😔
This is such a long journey, I’m getting very tired of it.
Thank you once again
Xx
Hi Lisalou19 ,
Unfortunately as others have said, getting a diagnosis can be difficult and take a long time. It can help to see someone who has a specialist interest in lupus though because they tend to have more experience with cases that are not 'typical' in their presentation. There are many lupus specialists with NHS clinics and some also/alternatively do private clinics. You've said that you are close to London, may I ask whereabouts? I could let you know about any lupus specialists we know near to you.
For further information and advice about getting a diagnosis of lupus, our article here may be of interest - lupusuk.org.uk/getting-diag...
I’m in Hertfordshire Paul. Thank you for your reply x
OK. Well depending upon where you are in Hertfordshire, if you are able to travel a little bit you have access to some great lupus specialists. In Cambridge there is Addenbrooke's Hospital and in London there is UCLH and Guys Hospital - all three of these are LUPUS UK Centres of Excellence - lupusuk.org.uk/centres-of-e...
As Melba1 mentioned, if you did want to try seeing a consultant privately there is also the London Lupus Centre - londonlupuscentre.co.uk/
Lisalou19,
Although I don’t have Lupus (I have Scleroderma another autoimmune disease) I went for a private consultation when I first got very ill to try and expedite things. Fortunately, my private consultant became my NHS consultant and I still see him twice a years. Although it took several months to get a diagnosis, he is a specialist in my disease and looks after me very well. I think it’s worth the money to expedite things and then try and follow up on the NHS. Time is a big factor in these autoimmune diseases as you need to be diagnosed quickly otherwise these diseases progress very fast without treatment.
Good Luck
Hello Lisalou19,
Like others, despite my ethical misgivings, I used the private route to jump the waiting list onto a NHS rheumatologist's caseload. The basic method was to find out if any of the local NHS consultants did private assessments, and then book it through their private secretary. Once I had been seen, he prescribed hydroxycholoroquine and steroids immediately and put me onto his NHS caseload. This one-off appointment cost just under £200.
Since seeing him on the NHS, I'd say that his methods and manner were no different - he didn't order any more tests or spend any more time on the consultation than usual. All I was paying for was to be seen in a week rather than in 8 months. Well worth it for me, as I was on long-term sickness absence from work, and, even had I turned out not to have a AI condition, it would have at least ended that worry. x
I did pay to see a private rheumatologist, but as my bloods are normal he seems a bit stumped. I appreciate that as a doctor they can’t know everything. His a really good man. But I do not have the time to keep being referred for what I think is irrelevant testing when my symptoms are staring them in the face.
Thank you for your reply .
It’s brilliant to hear positive feedback on this route and getting the names of the correct doctors to see
Xx
Hi - I saw a private Immunologist who diagnosed Sjogrens and recommended I get on his NHS list - it was then found I had Discoid Lupus. Saw him at a big teaching hospital and diagnosis and treatment was quicker than most. My bloods appeared clear so you need someone who has an interest in Lupus. There is a lot of confusing symptoms even for experienced doctors.
How do you confirm a diagnosis 
would you describe SLE as progressive ? 
So, how did people here get their diagnosis?
Before diagnosis did any of you suspect or worry about MS or something else?
