lupus

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lupus

Postby loubie » Wed Jul 15, 2009 7:43 pm

hi all :wave

my rhumie sent me for blood tests an i am being tested for lupus, has anyone got it ?
i have done a little read up on the net but found it very scary an i worried about it now :shock:
loubie x
loubie xx

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Re: lupus

Postby gillshutt » Wed Jul 15, 2009 9:31 pm

I think all of us who've been to the rheumy have been tested for it but it's unlikely that you have it, try not to worry ((xx))
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Re: lupus

Postby shazq » Fri Jul 17, 2009 5:40 pm

I know of people who have been tested for it, but they have all come back clear.

Even peeps from a crohns forum i use have tests for lupus, again they have all come back clear.

Please keep us updated. Good luck. :hugs:
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Re: lupus

Postby auroura » Fri Jul 17, 2009 8:19 pm

Hi hun, alot of ppl with fibro are tested for lupus, it was actually mentioned to me by the very first consultant i saw when i got ill 2 half years ago. He actually said he really felt i DID have some kind of auto immune disease but that it can take up to 7 years to show up in the blood. I knew a few ppl with it, yes it isnt pleasant, but its not always as bad as you think, same as MS, there are different kinds, with different severities. Take care, keep us updated and I have my fingers crossed for you.
Sharon

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Re: lupus

Postby *Lisa* » Fri Jul 17, 2009 8:29 pm

I was tested and then had to be re-tested :roll:

Just a precaution. I hope all is well
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Re: lupus

Postby loubie » Sun Jul 19, 2009 9:59 pm

hi all :grouphug:

once again you have all put my mind at rest with your posts thank you
it came as a bit of a shock to me as he never said anything about it and only said wonted boods done again. it was the blood nurse who questioned it, as have to take quite a big amount of blood to do the test so she had to ask other nurses to make sure
i felt a bit well a lot let down really although he did diagnose fm he never told me anything about it, just said to nurse "fibromyalgia booklet" she didn't have one so went off looking for one.
i asked about all the funny feelings in my head and i got my first "its part of the condition" then told i would get physio an pain clinic and off you go! we had to wait out in corridor for nurse to come back 10 Min's latter with one booklet.
went to my docs on monday she asked how i got on at the rhumy an wen i said he said its fibromyalgia she said "that's not really a diagnoses" so i am feeling a little confused this week (and we all know that don't take much anyway) so if it wasn't for all you lovely peps i would still think i was going mad. think i no more about fm than they do anyway!
they should read this forum.

thanks again :grouphug:
loubie x
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Re: lupus

Postby jay79 » Sun Jul 26, 2009 11:05 am

hi i was originally tested for lupus 2 years ago,came back not lupus and then 3 weeks ago again tested.
seemingly i have the clasic butterfly rash on my face sometimes and i get it on my chest,just waiting for results again which will no doubtly come back ok.
thing with f.m is its so alike many other illnesses(which are taken more seriously)
i was dx the same way as you aswell,given a booklet...do you think you have this?
my reply was,well i have those symptoms i guess,rhuemy...well yes,im dx you with f.m??
take care and i hope all goes well
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Re: lupus

Postby hamstergirl » Sun Jul 26, 2009 11:26 am

I had one appointment with rheum who listened to my symptoms said it prob fm because it's definitely not artritis. He gave me a booklet and discharged me. I was upset there was no follow up.

He told me he was sending a letter to gp to give me ami. Told him was a bit upset so he referred me to pain clinic.

He did say I could have had a post viral infection from when I had a serious chest infection buy didn't persue it. I wish they would keep making us app until we feel happy with diagnosis. :banghead:
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Re: lupus

Postby dollydaydream » Mon Jul 27, 2009 4:34 pm

Are you in Lincoln. That is EXACTLY what happened to me at my rheumy appt. I got referred to physio as well. Physio now says (3 months later) I need knee supports, but they can''t provide them without referral from a consultant (£20 each to buy on line !!!!). So I went back and hammered on the rheum dept door till someone in the back came and opened it (it wasn't a clinic day), and demanded the rheumy did something. They took my details and told me to leave it with them. So......either I get the knee splints......or I'm barred from the rheumy dept now! Ho hum! :crazy:
Sending you love and light

Sarah xxx
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