lupus diagnosis

[katepscot]

why in this day and age does it take so long to be diagnosed ?ive been to so many rheumys over the years and I'm still suffering and still being told no you dont have it although I've, got all the symptoms .I wonder why there is so many undiagnosed people could it be money thats at the bottom of this?

[Claregilchrist]

Wish I knew the answer as I am the same as you, xx

[chaimee]

Yes this is me to, came back from hospital only yesterday still do not want to put a label on me, just treat symptoms,on hydroxy and amytriptalin and something else sorry about spelling, still half asleep, which is what they usually give lupas sufferers, did ask for a second opinion, told me I would be only told the same thing., came to the conclusion last night as long as they try and treat symptoms be thankfull, as so many are fobed off, which I have been in the past,do believe it must be a bit of a mind field, so do hang in their .

[kirby66]

i spent over 10 years the same,in spite of having all the symptoms and the butterfly rash i have never had a positive blood result. eventually i went to St Thomas hospital in London i saw Dr dcruz he is the country's leading lupus Dr, he told me that 5% of all sufferers never get a positive blood result and it doesn't mean they don't have it. he gave me a letter for my rheumatologists.

[katepscot in reply to kirby66]

doctor hughes is the leading lupus doctor in britain he trained Dr dcruz ,although doctor Dcruz is a very imminent doctor now in the field of lupus ,they both work privately at the london lupus hospital london bridge .Its worthwhile paying to go private at least you are diagnosed quicker,and its not that dear

[Belee]

I feel exactly the same...very frustrated! ....I've been feeling poorly since August, have lost a stone in weight and have awful joint pain and fatigue and skin rashes. As my ANA came back negative they think it's a 'lupus like' disorder.....what does that mean?! ...My GP is excellent and thinks its lupus and is very supportive but the rheumatologist I've seen doesnt seem quite so sure. It's very frustrating and I'm beginning to wonder of I'll ever feel any better. Everything seems like such a battle.

[katerowley]

because lupus is known as the mimic disease, it can display ranges of symptoms that cover various diseases. i was diagnosed within a month through a blood tests, but it takes 6 years for the illness to establish itself then six tests before it can be fully diagnosed, or down graded to one of the connective tissue diseases. Although i have been downgraded, i still have elements of lupus.

[letslaugh63]

I'm not shocked by this as so many people on here are in same place.my 1 St app with rhuemy is next month and i'm going to be in same place.There are people on here that have been diagnosed for years and I'm not saying they should have cure by now but you would think they would be a common denominator in all lupus sufferers which could be detected.It seems lupus is harder to diagnose and treat than cancer. X

[Adamine]

Well - I'm in the same boat. It appears to be a VeRy LaRgE boat which can hold a lot of people

BUT - The Rheumy I saw last week did say the UCTD is a disease in it's own right and should be treated as so - not to feel undiagnosed!! Which was quite liberating, I didn't feel such a fraud - which I have been doing. Having said that, I think they don't see us as the most interesting cases and Lupus pulls rank...

I have yet another UTI - 8th this year!!! Never off the loo...

Seeing the Urologist this afternoon after having Kidney and bladder scans on Monday - so we'll see what he/she says...

Please take the positive and see UDCT as a "Proper" illness in it's own right...

Xx

[chrissiij]

Glad it's not just me! I have spent 14 years trying to get some sort of diagnosis, getting dismissed by doctors and consultants alike. Finally, I was told that I am "a bit loopy" - I have lots of symptoms, most of which are objective, yet lupus doesn't show in my blood - only the skin! So, I am not on 7 tablets a day, some given by a dermatologist and some by a rheumy, and I have to go back in 5 weeks to see if I have made any progress. The rheumy I saw for the first time yesterday is the first one who has ever taken a step back and really looked at my history and current situation and said "Yes, I can see what's going on". I have never been so happy to hear someone say that I have something! 'Uphill struggle' doesn't even begin to tell the story!

[Purpletop]

I think the doctors are starting from the assumption that it is probably something benign and easy to explain. So they order few straightforward blood tests. If they come back fine, then they try more complicated tests. If those come back slightly out of kilter, you are then sent to some specialist who will then order their own tests and try and explain in a narrow way what is happening. If they can't get to the bottom of it, you are then sent either back to the GP or to yet another specialist and the cycle continues. It would be easier to start from the premise that the symptoms signal something serious and test for that instead. That way lupus would one up pretty quickly.

It is perhaps a matter of policy, to start from simple to complex. It is probably cheaper in the short term, it is probably based on statistics that show most patients entering primary care do not present complicated illnesses, and so on. As an idea, I read a report saying that out of all Americans diagnosed with lupus in a certain period, only 25% were correctly diagnosed, so there is a fear of misdiagnosis.