Looking for answers

[Mummymoors85]

Hello all,

For the past 7 years I have been battling with a disorder that no one seems to know what it is.

Lupus has been one that was questioned and then brushed aside.

I currently have episodes of high temperature, low blood pressure, high pulse rate, aching all over, basically sepsis. CRP high and liver Functions high.

I have chronic inflammation of the liver and serious fatigue. I have urticaria all over. And reynards both hands and feet.

No one can find out what these episodes are and why is keeps happening 4/6 weeks. Does this sound like lupus or am I barking up the wrong tree.

Thank you for your time x

[Krazykat26]

Hi Mummymoors

U have definitely come to the right forum n I'm sure u will get plenty of responses..I'm reading this on a Sunday n lupusuk r on here too so I'm sure they will be in touch when they're working .

U said that lupus had been mentioned but was brushed aside..by whom? It does typically take several years of symptoms before lupus is diagnosed n it affects each one of us differently..although we usually have symptoms in common n their r different types of lupus..u will find out about these with the lupusuk info.

Fatigue, skin rashes, aching joints, inflammation all occur with lupus so u r right to investigate it..obviously we can't diagnose on here but u will definitely get useful info even if it's to rule it out. Apparently there r loads of autoimmune conditions..lupus being one of them.

I'm sure others here will let u know about testing..lupus was diagnosed with me through a blood test that was done by my dermatologist following years of unexplained skin rashes. I'm not great at the science stuff but have a look at lupusuk website n u will get loads of info there..n watch this space because this forum is very active, u have come to the right place!! Xx

[Mummymoors85 in reply to Krazykat26]

Thank you. It was ruled out by gastro but rheumatology re-questioned it again but I was passed on to some else and it didn’t get looked at. X

[Krazykat26 in reply to Mummymoors85]

Well if rheumatologist flagged it up as a possibility I would definitely persue it. They r the right 'ology' for managing lupus. Could u ask your GP to refer u to rheumatologist? X

[Mummymoors85 in reply to Krazykat26]

I have waiting for an appointment for rheumatology, infectious diseases and immunology. Just got to be patient. X

[Krazykat26 in reply to Mummymoors85]

That's good..so while your being patient u can find out more info about lupus as a possibility n ask the most appropriate questions at your appts with specialists. It often helps us to keep a diary of symptoms so that u can tell them what u have been experiencing even if it's not evident at the appt..take photos of any skin involvement x

[whisperit]

Hello Mummymoor85

As KrazyKat says, it is very difficult to identify any "typical" lupus patient. It presents in some many forms that virtually anything *could* be lupus. One of the fundamentals in diagnosis are the blood tests for auto-antibodies. So one of the important tests is called ANA - most people with a sytemic auto-immune condition will have a positive ANA, plus a variety of other auto-antibodies. The LUK leaflet on symptoms and diagnosis on the "Home" page here is a good place to get an overview on what a cinician should be lookikng for. Bear in mind that most people take years to get diagnosed, so don't give up and keep in touch here if you think it might help x

[Mummymoors85 in reply to whisperit]

You see I had an Ana test which did come back positive as the liver consultants where looking for something else but they said it came back mildly. I didn’t take much notice at the time. How does this test come back mildly surely it’s positive or negative. There is no in between 😂.

[whisperit in reply to Mummymoors85]

The ANA test measures how much self-antibodies you are producing. The level can vary from zero to - well, loads and loads! It's measured according to how much they have to dilute the sample before it becomes undetectable, so a "titre" of 1:30 means there's only a small amount of antibody present, whereas 1:2650 measn there's a lot. If you test at the lower end, it is usually considered negative or insignificant, because we sometimes produce self-anitbody temporarily as a result of an injury or infection - but then it goes away, no harm done. If yours was - for example - less than 1:120 or so, it might well have been classed as "borderline" or "mild positive" because it doesn't necessarily mean there's a clinically important process behind it. I'd suggest asking to be re-tested as you are still not satisfactorily diagnosed and your ANA showed some activity x

[Mummymoors85 in reply to whisperit]

I have had it twice on separate occasions and it’s come back “mildly positive” but when I get my appointment through I will get them to re-check it again. Thank you x

[whisperit in reply to Mummymoors85]

Have you asked them specifically whether you could have a systemic auto-immune disorder - and if they think not, what would account for the ANA result? x

[Mummymoors85 in reply to whisperit]

The liver doctor thought I had an autoimmune liver disease but after 8 months of gruelling tests they came up with blanks. So I’m starting again. I was knocked sideways on Friday when they told me no it’s not so didn’t think about asking about it but it’s on my radar now x

[whisperit in reply to Mummymoors85]

Yes, it's such a puzzle isn't it - and don't we always think of the best questions just after we've left the appointment? Keep plugging away x

[Mummymoors85 in reply to whisperit]

Ha ha we do. X

[Paul_Howard Partner LUPUS UK]

Hi Mummymoors85 ,

I'm glad to see that you have received some helpful advice and information from other members of the community. As they have said, there isn't really a 'typical' presentation of lupus and therefore it can be difficult to diagnose. It is a bit unusual to have a high CRP in lupus though. Usually one of the hallmarks of lupus is a raised ESR with a normal CRP.

Are you currently on any treatment for your symptoms? Are you undergoing further investigations?

If you would like some more information and advice about the diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...

We also have a free lupus information pack which you can request or download at lupusuk.org.uk/request-info...

[Mummymoors85]

Hi Paul my CRP goes up and down like a yo-yo but is general high.

Only plan I have at the moment is when I present with a bad episode to go to hospital because I become medically very unwell.

But I'm now waiting for an appointment to come through to go back to rheumatology. But I do imagine I will land up becoming sick again before this happens, as I'm having bad episodes monthly.

Thank you for the information I will have a look.