SLE and HUV are they connected?

Hi

I was recently diagnosed with SLE in early November 2011. However I have seen two consultants and one is not convinced that SLE is the right diagnosis as I am only hitting about 3 or 4 of the 11 criteria and my ANA is negative. Although C3 and 4 are extremely low. This particular consultant has asked for a skin biopsy as he thinks that my symptoms (painful burning whelts all over my body , swollen hands, fatigue, muscle stiffness, abdominal pain, dry mouth, weight lose to name a few) are pointing more towards Hypocomplementemic Urticarial Vasculitic Syndrome.

Has anybody else experienced this different diagnosis. I am at my wits end with the fatigue and swollen hands. The rash is driving me crazy and they have refused to give me any medication until they know what they are dealing with. My GP is of no help because he told me that he knows nothing about SLE or HUV! Things are just taking so long.

Any comments would be really appreciated as I feel in the dark and my positive thinking is fading fast.

Thanks x

2 Replies

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  • Hi,

    I'm really sorry but I don't know anything about HUV. Sorry things are so tough at the moment, keep plugging away at the doctors until they sort you out, or at least give you some form of diagnosis. My ANA has never been positive but I am being treated as though I have SLE.

    I hope someone can give you some info on this.

    Take Care, xx

  • Im sorry you are haveing a tough time and I agree everything takes ages and they dont seem to bat an eye about 3 month wait etc. Ive had 2 skin samples taken they are under where i would where a watch so sort of hidden. It is worth getting a diagnose because in the future if makes it easier if you are in a neat box when it comes to doctors.

    Ifirst had tremers and plurisey and phenmoner when I was 15 now at 41 itsdevelpd but I must have seen 10ish docs over the time and i finallly found one which looked at the whole me and saw mixed connective tissue disease following lupus SLE and so i now have leaflets to show the family etc which means ive not been going mad with bizzare things happening im so greatful because before the diagnose i was lost to explain,

    so good luck i would suggest you go with it and see where it takes you, and if you find a doc which thinks they have sussed it and you get on with them stick there. and you would not be putting yourself through seeing docs and tests if you felt fine so follow your gut. Good luck

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