Does anyone know anything about Lupus?

[mummytopebs]

DD has currently an undiagnosed condition. She has a problem with her blood vessels where as they shut off to her limbs and cause them to swell and change colour. She also doesnt wee a lot. The consultants are baffled and so put her symptoms and photos etc on a forum for consultants in Europe and America.

A consultant from Germany has said she thinks it might be chilblain familial lupus and has took bllods and is testing them.

I have had a look at lupus on net and think this might be a possibility as her symptoms do come and go and there are a couple of other things thatg ring bells. However she does not get a butterfly rash which seems to be mentioned often. Does anyone know anyone that suffers from lupus? What where there symptoms?

My Mum has lupus. She does not have the butterfly rash.

She has lots of arthritis type pain all over her body that comes and goes. And other problems she wouldn't necessarily discuss with me.

It took them 3 years to dx her Lupus. (But this was 30 years ago) So keep on it.

Thanks for your reply Indigobell. Does she have problems with her blood vessels? Do her limbs ever go red or black and blister?

I dont know if dd has arthritis type pain as yet as she is just coming up 1, but her knees do swell and her joints click and grind. I know there are no blood tests for lupus but apparently if it is this chilblain type there is a chromosome missing.

Is your mam on any medication? DD has been put on nifedipine to open her blood vessels and Asprin to thin her blood. Sorry for the bombardment of questions

God, Mum's on loads of medication. The only one I know is prednizone which is a steroid. Being on steroids for 35 years has obviously then caused loads of other health problems.

Her limbs don't do that at all. I think there is a blood test for Lupus.

But Lupus is one of those diseases where you have to have '6 out of 12' symptoms or something. So it's perfectly possible that my Mum's Lupus would be 100% different to your DDs.

I have lupus. There is a blood test for it. It's an autoimmune condition. Know one knows what causes it and treatments include steroids. At it's worse your own body can attack its internal organs having decided they are 'alien'.

Mine is discoid lupus so I have the butterfly rask but the affected organ is only my skin. It's akin to rheumatoid arthritis.

Lupus is one of the underlying reasons for preeclampsia. You could go to the preeclampsia forum and I am sure you would get lots of feedback. Good luck.
(I had preeclampsia this is why I know, but I do not have lupus). Second that there are test, that are an indication for Lupus (I think it's called ANA test ?)

www.preeclampsia.org/forum/viewforum.php?f=12