Hi everyone 
I was actually a member of these boards a couple of years ago although I never posted a lot, and now can't seem to retrieve my membership!
It's been about 18 months or more, and you've certainly done some changes 8)
I can't actually remember my username before, it was probably Evie?
Anyway, to reintroduce myself, I'm Eve and I have had a lot of symptoms of Lupus on and off for the last 10 years, though my body has never obliged to produce the right anti bodies to get a dx yet. Although it's given some "suspicious" results to do with WBC, proteins and inflammatory activity.
So far my history includes arthritis and joint pain, nephritis, repeated blood and protein in urine tests, rashes including the face, mouth and nose ulcers, hair loss, fatigue, brain fog, one episode of pleuresy, a minor stroke, still unindentified UV sensitive skin sores, UV triggered migraine-type headaches and lots of neuro problems.
I've had a neuro flare up over the last couple of months, and a waste of space referral (more elsewhere) and am in limbo. My GP doesn't really get the Lupus history, and thinks it's MS. I was thinking along those lines as well as I had no other lupoid-ness with the neurological symptoms like I did last time. Until now.
Anyway, for the last 2 years I've lived with dizzy spells, some vertigo, spacial awareness problems, noticeable muscle weakness on my right side (not related to the stroke BTW) and I can't use my right hand for things like writing, mixing, dispensing petrol or squeezing aerosols, and I now have limited movement in the right side of my face, and am struggling to empty my bladder (TMI :blush: )and am still having further to tests to investigate that with urology, but they believe at the moment it's neurological as well. All these symptoms are getting worse again now and have been for the last 2 months or so. But the neuro has just tried to sign me off with no further tests/MRI or even a proper neuro exam or history after a ten minute appointment when his clinic was running late
I guess I've come back today because the sun has come back and I couldn't resist spending time in my garden - big mistake I was knocked out for about 3 hours and couldn't get out of bed, my hands are red and itching, my face rash has burned into life, and my left knee has swollen up. This was after my GP also mentioned this morning in an appointment about my urine retention that all but one of the urine dips I've had since I moved there (nearly 2 years ago) have shown trace blood and protein. But not enough to cause concern - to someone whose been in hospital with nephritis before?!
I'm really struggling with docs at the moment, as you can probably tell :hehe:
I know it's time to gather my strength and fight them for a referral back to rheumy and try again with the bloods. What it's doing to my nervous system worries me, but everyone else seems to be moving in slow motion. And they don't like the fact I say I think I have Lupus. I say I can't help having common sense and the ability to do some research!
I'm feeling very tired and fed up right now, and the need for some support :worried:
It's reassuring to be back among people I know will understand xxx
I was actually a member of these boards a couple of years ago although I never posted a lot, and now can't seem to retrieve my membership!
It's been about 18 months or more, and you've certainly done some changes 8)
I can't actually remember my username before, it was probably Evie?
Anyway, to reintroduce myself, I'm Eve and I have had a lot of symptoms of Lupus on and off for the last 10 years, though my body has never obliged to produce the right anti bodies to get a dx yet. Although it's given some "suspicious" results to do with WBC, proteins and inflammatory activity.
So far my history includes arthritis and joint pain, nephritis, repeated blood and protein in urine tests, rashes including the face, mouth and nose ulcers, hair loss, fatigue, brain fog, one episode of pleuresy, a minor stroke, still unindentified UV sensitive skin sores, UV triggered migraine-type headaches and lots of neuro problems.
I've had a neuro flare up over the last couple of months, and a waste of space referral (more elsewhere) and am in limbo. My GP doesn't really get the Lupus history, and thinks it's MS. I was thinking along those lines as well as I had no other lupoid-ness with the neurological symptoms like I did last time. Until now.
Anyway, for the last 2 years I've lived with dizzy spells, some vertigo, spacial awareness problems, noticeable muscle weakness on my right side (not related to the stroke BTW) and I can't use my right hand for things like writing, mixing, dispensing petrol or squeezing aerosols, and I now have limited movement in the right side of my face, and am struggling to empty my bladder (TMI :blush: )and am still having further to tests to investigate that with urology, but they believe at the moment it's neurological as well. All these symptoms are getting worse again now and have been for the last 2 months or so. But the neuro has just tried to sign me off with no further tests/MRI or even a proper neuro exam or history after a ten minute appointment when his clinic was running late
I guess I've come back today because the sun has come back and I couldn't resist spending time in my garden - big mistake
I was knocked out for about 3 hours and couldn't get out of bed, my hands are red and itching, my face rash has burned into life, and my left knee has swollen up. This was after my GP also mentioned this morning in an appointment about my urine retention that all but one of the urine dips I've had since I moved there (nearly 2 years ago) have shown trace blood and protein. But not enough to cause concern - to someone whose been in hospital with nephritis before?! I'm really struggling with docs at the moment, as you can probably tell :hehe:
I know it's time to gather my strength and fight them for a referral back to rheumy and try again with the bloods. What it's doing to my nervous system worries me, but everyone else seems to be moving in slow motion. And they don't like the fact I say I think I have Lupus. I say I can't help having common sense and the ability to do some research!
I'm feeling very tired and fed up right now, and the need for some support :worried:
It's reassuring to be back among people I know will understand xxx
