Hi first time on site how long does it take to get a confirmed diagnosis

[leebo]

[Jinny]

How long is a ball of string x

[leebo in reply to Jinny]

That's what I've heard for the last sixteen years seems were all told the same

[Adamine]

Interesting question....!!!!!!

xx

[Dumpypug]

Hi

It can take quite a while to get diagnosed as the Drs need to monitor you and your symtoms. I found the best thing to do is keep a health diary, about a week before any appointments go through the diary and list all of the symptoms, feelings and problems you have had since your last appointment and which is bothering you the most.

Try and talk to as many people with lupus as you can, getting their input will be really helpful, I found a support group in Chester and they have been a life saver, is there anything in your area?

Good luck

x

[roobarb]

Hi leebo, as you've discovered lupus can be very hard to diagnose. There is no specific test to confirm the presence of the disease. Rheumatologists try to piece together clues from a patients blood tests & symptoms to gain an overall picture. Very often it is a case of wait & see how things develop. Which is really frustrating when you are feeling poorly, & your quality of life is effected.

There is lots of helpful info about diagnosing lupus on St Thomas' lupus trust website, Lupus UK & the Lupus Foundation of America. I found the patients stories on the St Thomas site particularly helpful, as you can gain insight from other peoples stories. And, as dumpypug says, there is nothing like talking to others at your local support group if you get chance. You will be made very welcome.

Best wishes. X

[leebo in reply to roobarb]

Thanks found the st Thomas site very helpful. seems I've had lupus for about sixteen years but told it was nash.hopefully can get help with fatigue, pain, dry eyes, dry mouth,kidneys, pains in chest. anyway thanks for your help

[Purpletop]

Depends on how persistent and convincing you are. Took me 2 years but I have pestered everyone and challenged doctors' views every step of the way. You need to keep a record of all your symptoms and make a case for why each one of them is not normal in your case and try and emphasise any pattern that you can see emerging. Don't be afraid to ask 'why not' rather than 'why', as in why things cannot be taken as lupus, rather than things can be taken as something else. Tends to focus doctors' minds.

[Purpletop in reply to Purpletop]

Meant to also say - one of the forum's contibutors, Sher, always says 'know your body' and I fully subscribe to that because you need to convince people in the context of your unique set of circumstances. Knowing what is abnormal for you will make the argument stronger.

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I've been told that the NHS are reluctant to perform the DNA strand test as its very expensive!!! My doctor told me that if I didn't have the test I would probably cost the NHS even more money!!

I've been really unwell for 5 years but only recently been tested for Lupus (about 4 weeks ago)

Was meant to be tested in January 2012, but my hospital failed to do the test!!! I'm still waiting for the results and have been off work for a week and was admitted to hospital with acute renal injury in July 2012. It's a long long wait