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Pollianna
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Discussion Starter #1
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?:p
 

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Hello Pauline and welcome :)

I'm sorry to hear what brings you here but very glad that you have now got a good doc (one of the best) and are being taken seriously.

Many of us have been through years of being told that we were overstressed, overworked, depressed... It often takes quite a while for the bloodwork to confirm what we have been feeling for a long time and to show the docs that yes, it is quite bad.

No-one here will think you mad for being relieved that you finally have a name for this. I mean, we already know we're ill - the problem being all the time and effort in trying to get anyone else to actually treat us fot it.

I'm sure that you'll find this site of great comfort and also extremely useful for questions and worries that you have.

We will look forward to hearing more from you and if we can help in any way don't hesitate to ask questions.

Bye for now,
Katharine
 

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Hello Pauline, Welcome here. Brighton is lovely, very vibrant. My grown up children love it, so do I except I can't get around it well enough.

The further blood tests will show if any organs like the liver or kidneys are involved. Probably they aren't but Dr. D'Cruz is very thorough on his testing. It will take a little while on antimalarials to get an improvement so Dr. D'Cruz is probably wary of making any predictions at this time. Do you have Fibro. too? It is often a secondary condition.
x Lola
 

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Pollianna
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485 Posts
Discussion Starter #4
Hi Lola lola and Katherine, thanks for the lovely warm welcome. I was told by a Neurologist that have fibro but to be honest my symptoms weren't different to what they are now, less localised pains then, knees ect are terrible now which I feel is just the progression of the disease. I have always had a feeling that fibro is a symptom and not a diagnosis.

Yeah I thought the further tests were to see if the kidneys and lungs etc are involved. I guess I am philosophical on the outcome. Whatever happens I will handle it. Am looking forward to getting the medication. Would be nice to see my eyebrows grow again :)
 

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nice to meet you. your story is really inspiring. you aren't mad. but the situation is. i can relate to your experience with the doctors. there are few things that are more frustrating. i like to think that it is helping to me to develop a unique sense of humor. :)
 

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Pollianna
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485 Posts
Discussion Starter #6
Hi fallin, hard going eah? I got my next appointment for 26th Feb. I'm so impressed at how quickly he's got me up there again. I'm not in remission yet with this flare but am trying to sort it out. Working is soo hard going as I work from 10am till 9pm, don't get in till almost 10 so there's a 12 hr day most days. Only 7 tomorrow lol.

I'm starving but too tired to cook, can't wait to get some treatment, it's been a long decade :hehe:
 
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