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100 Posts
Hi
I am not diagnosed but would like a firm diagnoses.
I know I have Lupus, and most of the time it is mild, have a a few severe flares in the last 10 years one being when pregnant with my son at which time I was told by piediatricians when my son was born I have Lupus.
My son was born with Neonatal Lupus and heart block, had his first pacemaker fitted at 5 days old (now a 4 year old starting school full-time in september and not a care in the world).
It was then I realised my mother had SLE, she had protected from it pretty much.
I have had so many symptons over time and keep a log, (not with dates but general details), I have never had a positive ANA etc test result, although my son is testament that I have had a some point, (this is what caused his condition).
I haven't been to St Thomas's since May last year, since I was started on Predisolone, (life changing for me I now have a reasonable 'normal' life and am at the end of a very intensive teacher training course). I was told at my last appointment that although I had symptons without a positive blood result, they would not put a label on it, and felt as though they almost accused me of making things up. (I did not have anyone with me at my last appointment, but my husband is going with me tomorrow, to speak at the points I normally wish I had said something when I get home).
I have looked at the alternative criteria list, and will go well armed as I 'tick' lots of boxes on there, (there is only a few I don't!) I know that blood results are not crucial, my mother gets negative results even during flares and she has severe lupus and rashes.
After 4 1/2 years I feel like sitting there and refusing to leave until they diagnose me or take things seriously.
I feel I am following the same pattern of lupus as my mother, it worsening in middle age (40-50ish at menapause), as I am 40 next year and feel the clock ticking.
On a plus side if you can call it that, the combination of the appointment, essay writing and the end of my course looming (I am working so hard to pass), I am exhibiting very obvious flare symptons. (hair loss, sore scalp, temporary rash on face - although it last short spurts, joint pains stiffness, concentration and memory problems, tiredness)
Can anyone give advice on the best way to go about my appointment other than a sit in!
Thanks in advance, sorry for the long post (years of frustration).
I am not diagnosed but would like a firm diagnoses.
I know I have Lupus, and most of the time it is mild, have a a few severe flares in the last 10 years one being when pregnant with my son at which time I was told by piediatricians when my son was born I have Lupus.
My son was born with Neonatal Lupus and heart block, had his first pacemaker fitted at 5 days old (now a 4 year old starting school full-time in september and not a care in the world).
It was then I realised my mother had SLE, she had protected from it pretty much.
I have had so many symptons over time and keep a log, (not with dates but general details), I have never had a positive ANA etc test result, although my son is testament that I have had a some point, (this is what caused his condition).
I haven't been to St Thomas's since May last year, since I was started on Predisolone, (life changing for me I now have a reasonable 'normal' life and am at the end of a very intensive teacher training course). I was told at my last appointment that although I had symptons without a positive blood result, they would not put a label on it, and felt as though they almost accused me of making things up. (I did not have anyone with me at my last appointment, but my husband is going with me tomorrow, to speak at the points I normally wish I had said something when I get home).
I have looked at the alternative criteria list, and will go well armed as I 'tick' lots of boxes on there, (there is only a few I don't!) I know that blood results are not crucial, my mother gets negative results even during flares and she has severe lupus and rashes.
After 4 1/2 years I feel like sitting there and refusing to leave until they diagnose me or take things seriously.
I feel I am following the same pattern of lupus as my mother, it worsening in middle age (40-50ish at menapause), as I am 40 next year and feel the clock ticking.
On a plus side if you can call it that, the combination of the appointment, essay writing and the end of my course looming (I am working so hard to pass), I am exhibiting very obvious flare symptons. (hair loss, sore scalp, temporary rash on face - although it last short spurts, joint pains stiffness, concentration and memory problems, tiredness)
Can anyone give advice on the best way to go about my appointment other than a sit in!
Thanks in advance, sorry for the long post (years of frustration).