Help Please?

[Becky84]

I have been told it is 95% certain that I have Lupus. The hospital are still confused as raised antibodies and symptoms are saying Lupus but the Lupus test has come back negative. Seeing Consultant in 4 wks. Has anyone else had results like this?

[neddie]

for five years the doctors were convinced that my wife had an under active thyroid gland issue and because lupus is such a wide and varied condition it is hard to pinpoint the exact condition.

[nerri]

hi becky, yes i am very much in the same situation as you. some tests point towards lupus, others comming back negative. but my symptoms point to lupus and i also have stiff person syndrome and apparently there is a known linked between both illness. my consultant has started me on hydroxy. because lupus is such a complex illness, i think it can sometimes be difficult for doctors to give a deffinate diagnosis if some blood results come back negitive. i know how hard this must be for you, i hope you get some clear answers soon.

sending you love and smiles, nerri

[Becky84 in reply to nerri]

Thank you Nerri. The first person who fully understands! Its hard to fight when you don't know what your fighting. Keep in touch.

[nerri in reply to Becky84]

yes becky my thoughts exactly. iv said to my husband, since this has started how hard it is to fight when i dont know what i am up against. its been almost three years now since i first became ill. totally out of the bloo, i woke up with pains in my legs and fatigue that was so bad i couldnt get out of bed. since then i have continued to get worse and develope a whole range of symptoms. firstly i was diagnosed with fibromyalgia, then cfs/me, then in march i was dx with stiff person syndrome and now lupus. nothing is ever clear cut and i find this very difficult to deal with. in my eyes i either have it or i dont, but i am learning it really isnt that simple. so hang on in there lovely, im hope you will get some answers soon, but just wanted to say that i understand what you are going through.

love and smiles

nerri

[Kellyleg]

My bloods came back borderline, the rhuematologist will know by symptoms. X

[Becky84]

That's what I've been told. You don't have to have a positive result for the consultant to diagnose Lupus

[Smiler1]

I too had a negative result (skin biopsy), but was still diagnosed with Lupus- Dr & head dermatologists say i'm a ''text book Lupus case'- & that, is without them even knowing all my medical history!!! (I went for an emergency Dr appointment when I was living away from my home town)

Please listen to yourself, you know your body better than anyone! & never be 'fobbed off' by any medic!

Good luck :0)

[Hidden]

Hi there Becky. I hope you find some help and support here. Just like most people with Lupus I have spent years having blood tests which are sometimes positive, sometimes negative and sometimes downright contradictory. It's the nature of our condition unfortunately; not to be easily diagnosed by some simple test. Listen to your own body and don't let the docs put you off. If it walks like a duck, quacks like a duck, etc. but there's always an outside chance it's something else so keep an open mind about the whole spectrum of auto-immune conditions.

Take care.

Stephen