SLE Lupus Here’s a frustrating topic for me this condition affects many people and no two people can be affected the same. A very complicated condition that can often take a lot of time to diagnose. But I’m in a little harder situation with being able to get a diagnosis. See most people that have SLE have a positive ANA test, but my ANA was negative and it used to be thought only 2% of the population have SLE with negative ANA. It is now thought that between 6-7% of the population have SLE with negative ANA. After seeing a rheumatologist and going through the long list of symptoms which are :
Drooping eyelids
Discolored eyes
Twitching jerking
Bows lines
Red nose & cheeks
Tender head to touch
Speech at time’s affected
Chest pains
Spinal problems
Buzzing sensation in head & body
Feeling of body & back being wet
I’m sure there are probably more symptoms and the Rheumatologist certainly agreed that all symptoms fit in with sle lupus but having negative ana made it hard for her to diagnose. My condition certainly worsened when they took me off Plaquenil. So I am back on Plaquenil and her suggestion was further testing with immunology department as my Factor B condition is so rare that they could help me further diagnose Sle. A very frustrating situation still going through the bullshit of this all. But it brings me so much frustration!! When ever I see someone knew they look at the size of my files and hear that I’m the only person in the world with Factor B and I always seem to end up in the too hard basket.


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