Hi, I'm Pauline, 43. I'm in Brighton UK. I'm so glad to finally be able to register here. I saw Dr D'Cruz on Thursday. Everything ( this time) I pointed out to him he said, yes consistent with Lupus. My bloodwork shows signs of overactive autoimmune response. I had the butterfly rash , which he saw and commented on.The dry eye test he said was bone dry.
21 further blood tests were done and he's told me he will treat me with antimalarials when the new bloodwork results are back and I go up again. I have not been designated a type of Lupus yet, is this normal? For those of you who know him, how long does it take for him to find out which one it is?
He first saw me in August after it taking me nine years to finally get someone to take me seriously. I asked the GP to send me to a Rheumy and managed to get them to let me go to St Tommys. Dr D'Cruz initially thought it was Fibromyalgia and he wouldn't need to see me again. I think the letter from my GP who said he'd checked for Lupus and ruled it out had an affect!!
I felt devastated as I knew I had an immunity problem. I think sometimes we just know. Has anyone else had this experience?. The bloodwork returned showing overactive immune response.Thank God he checked me thoroughly anyway.
Even with 18months of severe disability which started in 2001. I was offered no treatment (they couldn't find out what was wrong) it all followed a virus that followed a car crash (looking back I was ill before that). I had joint pain, was totally unable to walk, I couldn't even make memories for over a year. I was bedridden. I was told that I had Chronic Fatigue Syndrome and Fibromyalgia. My then GP told me I was fatigued but that it was "all in my mind" and sent me to a Shrink . I can't believe I got through those dark times albeit not entirely unscathed. I imagine many can relate to this...I decided to cure myself and literally took each symptom and tho it took years I managed to get myself to the stage where I can walk and I work but I can't do much of anything else as a result.
I now live with sometimes loosing the use of my legs, joint pain everywhere, severe fatigue, hair loss, butterfly rash, bouts of adrenalin rushes, hair loss, lol, written that twice memory loss and a whole host of other delights. I am constantly hungover and in pain. I get pleurecy etc.
I think I am truly blessed to finally find the Lupus unit. I have long laid to rest any anger and dissapointment towards the GP's and specialists who missed my illness or dismissed me as a patient and labelled me attention seeking or less kindly just plain nuts. I am generally a happy bod and just get on with things. I suppose I am one of the lucky ones not to be devastated at the prospect of having a lifelong autoimmune condition. I seem to have found some way of coping emotionally within the last 9 years when my body runs away with itself. I always seemed to understand it was now with me for life .
As I write my fingers ache, my knees burn, my back is killing me, shoulders , eyes, head and mouth ache. Hair is falling on the laptop but I'm so relived just to be able to put a name to this. Am I nuts?
21 further blood tests were done and he's told me he will treat me with antimalarials when the new bloodwork results are back and I go up again. I have not been designated a type of Lupus yet, is this normal? For those of you who know him, how long does it take for him to find out which one it is?
He first saw me in August after it taking me nine years to finally get someone to take me seriously. I asked the GP to send me to a Rheumy and managed to get them to let me go to St Tommys. Dr D'Cruz initially thought it was Fibromyalgia and he wouldn't need to see me again. I think the letter from my GP who said he'd checked for Lupus and ruled it out had an affect!!
I felt devastated as I knew I had an immunity problem. I think sometimes we just know. Has anyone else had this experience?. The bloodwork returned showing overactive immune response.Thank God he checked me thoroughly anyway.
Even with 18months of severe disability which started in 2001. I was offered no treatment (they couldn't find out what was wrong) it all followed a virus that followed a car crash (looking back I was ill before that). I had joint pain, was totally unable to walk, I couldn't even make memories for over a year. I was bedridden. I was told that I had Chronic Fatigue Syndrome and Fibromyalgia. My then GP told me I was fatigued but that it was "all in my mind" and sent me to a Shrink . I can't believe I got through those dark times albeit not entirely unscathed. I imagine many can relate to this...I decided to cure myself and literally took each symptom and tho it took years I managed to get myself to the stage where I can walk and I work but I can't do much of anything else as a result.
I now live with sometimes loosing the use of my legs, joint pain everywhere, severe fatigue, hair loss, butterfly rash, bouts of adrenalin rushes, hair loss, lol, written that twice memory loss
and a whole host of other delights. I am constantly hungover and in pain. I get pleurecy etc.I think I am truly blessed to finally find the Lupus unit. I have long laid to rest any anger and dissapointment towards the GP's and specialists who missed my illness or dismissed me as a patient and labelled me attention seeking or less kindly just plain nuts. I am generally a happy bod and just get on with things. I suppose I am one of the lucky ones not to be devastated at the prospect of having a lifelong autoimmune condition. I seem to have found some way of coping emotionally within the last 9 years when my body runs away with itself. I always seemed to understand it was now with me for life .
As I write my fingers ache, my knees burn, my back is killing me, shoulders , eyes, head and mouth ache. Hair is falling on the laptop but I'm so relived just to be able to put a name to this. Am I nuts?
