Only Post viral pain? that makes no sense! - LUPUS UK

LUPUS UK

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Only Post viral pain? that makes no sense!

Coopski profile image
2 Replies

I've had a lot of negative blood tests and seen loads of doctors. I have kidney problems as well as with my heart, liver, nervous system, mental state and digestive tract and am in a lot of pain in my muscles and joints (150mg of dicloflenac and 60-120mg of morphine daily) with blood problems (many other things but i get a lot of clots). i don't have any kind of skin problems but 9 out of 10 doctors have said "it's probably lupus", unlike house :P. I when to see the rhumy and she said i'm fine (but all the swelling had gone that day. typical) should i go and get a second opinion? i'm sorry this is mainly just a rant. she seemed to make up her mind before i got in the room.

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Coopski
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nanny4 profile image
nanny4

Hi there,my daughter was dxd with severe systemic lupus a year ago,she. does have bad skin sores all over,scarring on her heart valves and kidneys,she had tunnel vision,swelling on her brain and spinal cord,severe water retention,stomach pains,often had episodes of near blackouts,the list goes on.To cut a long story shory she was dxd with no positive bloods,just inflammatory markers all the time and symptoms,she didn't know that ,well she doesn't have lupus,she now has been dxd with small vessel vasculitis,now she has to have tests to see what type of vasculitis is really is.

So the long road starts again for her,more scans,bloods,biopsies etc,drs were convinced she had systemic lupus,then along came another dxs as she was still unwell,good luck with your quest for a dxs,i do feel for you.sandy.

Coopski profile image
Coopski

thank you, i'll talk to my GP and discuss what would be the next path or what ever would be best to take.

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