Help

They are with me being in the 10% of SEL Lupus sufferers with a Neg RNA still the 10% with SEL Lupus. The Dr's are with holding the diagnosis until there is a clinical need and making me out to be crazy when I have had SEL Lupus since the age of 5 it isn't any thng new. with my SEL Lupus 10% the Drs will with holding the diagnosis until there is a clinical need. what should I do about this.

6 Replies

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  • hi angeldark have you told the doctors that the response from them is worrying you by with holding the results but with out knowing your full state of health its hard to advise you have you spoke to blf lm sure they could advise you better good luck x

  • Hello,

    Have you got in touch with Lupus Europe lupus-europe.org/ ? I wonder if they could help in any way.

    Sarah

  • Hi

    Have you looked at the LUPUS UK community - healthunlocked.com/#lupusuk.

    They will have much more information about the diagnosis of Lupus etc.

    Thanks

  • This link does not work - 404

  • I started to get these purple marks I had a red mark on my forehead and under my eyes the marks got worse in the sun light and if I cut myself I bleed for hours. I was tested for lupus but as I understand it lupus does not always show up in blood tests they couldn't work out what was wrong with me so when they realised I had COPD and took steroids they put it down to that they never gave me the chance to tell them the purple makes and bleeding started before I took steroids.

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