LUPUS UK
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Tunnel/blurred Vision

I’m currently going through a Lupus flare up, my first bad one in months, on Monday I completely lost my sight which then improved to tunnel vision and after 3/4 hours my vision returned although still blurred and strained. Yesterday my head felt heavy still, I felt like my eyes were straining to focus still and I couldnt stand for to long without becoming exhausted and disoriented, today I’m feeling better than the last couple of days, my vision was ok until I ate some biscuits now I feel exhausted and blurry again, this is new for me and has never happened during a flare up before, has anyone suffered from anything similar before? I’ve contacted my consultant, just awaiting a call back from him xx

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If you now say this is something you have never experienced before - what made you think loss of vision was OK to ignore? If you are in the UK and have severe visual problems you should call 999 (or emergency services whatever country you live in) - and tell them what is happening.

Actual visual loss in SLE is not common and it is a symptom that can be due to a lot of things, some of them potentially serious and which need checking out immediately to prevent permanent damage. In a study of 4 SLE patients with visual loss, in 2 it was a presenting feature of the SLE, the other two were retinal problems.

I'm sorry if I sound over-dramatic - but I'm being realistic.

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Hi Rachel

I have no idea about the lupus connection and vision loss, but as PMRpro stated - vision loss whether related or not is indeed a matter to be dealt with sooner, rather than later. I do hope your consultant responds today, and you find a solution to what has caused this.

Sue. x

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I phoned 111 when it initially happened and was sent to A&E to be checked over (sorry I should have said in my original post) they were happy it wasn’t anything sinister and that it was due to having a flare up as I hadn’t lost complete sight again, I still haven’t heard off my consultant, I’ll phone again tomorrow as it’ll have been 48 hours by then, I’m not really sure what else to do xx

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There isn't a lot you CAN do I suppose. But i'm slightly horrified at such a cavalier attitude to visual loss.

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I did have an episode of loss of vision after a nap on a really hot day. My vision came back as I cooled off. Now I think it was stupid not to have gone to the ER, but I had bad insurance. Also, the phrase "going blind from the heat" came to me, so I thought it must be something that happened. (Pre-Google.) Anyway, it never came back, and the eye doctor sees no evidence of nerve damage in my eyes now. This episode happened in the 80s.

I still though have problems with my nervous system and have had some pretty odd neuro symptoms that have come and gone. I believe I'm still in the UCTD, mild-lupus category.

I hope this also is a transient thing for you, but definitely talk to your doctors about it.

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