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Rank: Member
Groups: Registered
Joined: 2/13/2010 Posts: 24
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As you might have read in my other posts I have been very ill for the past few weeks after suffering a miscarriage in January. I was told i had palandromic arthritis, but yesterday I saw my rheumatologist and I found out I had tested highly positive for lupus. She isn't making a firm diagnosis yet as she thinks theres a 50:50 chance its a false positive caused by hormones. I am feeling very shell shocked, but it certainly explains why I've been feeling so ill why my back was affected. My stomach is still not right, but they still think it's separate to the lupus/arthritis & the omeprazole has finally started to help the pain although i've started being sick in the mornings again I'm being referred to a gastroenterologist) . I began taking 5mg presnidrone today. Am feeling very sad  can't take it all in, everything has gone so wrong, it's hard to believe now it was only 2 months ago we were looking forward to our new arrival. It's very scary. I'm not even on the right forum now!!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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HI Angel,
I'm not surprised you are feeling shell shocked! So sorry you have been given yet another diagnosis, but don't forget , as the doc said, it could be a false positive because of the hormones. When is she seeing you again? It's good to hear your tummy pain is easing a little, I hope you can get that sorted out soon, I also hope the prednisone helps with the joint pains. It's horrible when everything goes wrong like this but things will improve, it just doesn't feel as if they will right now. Have you been offered any counselling at all ?
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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oh Angel Im so sorry to hear the result, Lupus is another immune disease that can effect the joints along with other things- Im guessing they have told you about the sticky blood and Hughes? Anti Ro and Anti La are the other bloods Im guessing they will do- it can occur with lupus and sjrogens disease too along with other things. I had these tests when we lost our baby before I had Bernice.
I'm afraid my sister has Lupus SLE, she is 31.
I am rather pleased that they did at last test you and now they can protect you (and baby) in pregnancy with this knowledge. There is no single test for Lupus but more of a criteria- Im sure you know all of this.
There is some smashing support out there including Lupus UK, www.butyoudontlooksick.com (where you can read about people who have become Mums successfully despite having Lupus.
Anyway please do check out these site
http://www.uklupus.co.uk/
http://www.lupus-support.org/
http://www.lupusuk.org.uk/home
http://www.yorkshirelupu...rg.uk/forum/list.php?16
I apparently might have "rupus" which is a cross inbetween lupus and RA but have not tested positive for the ANAs etc. I am so terribly sorry angel and wish I could hug you and it is just NOT FAIR.
So much love to you
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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ps. You are WELCOME here any time not "wrong forum" at all. Bless you. My email is jennifer.beavis-lacey@sky.com ANYTIME xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Angel sending a big warm hug so sorry see this new possible diagnosis,it may still be a false postive due to hormone. the sites jenni mentioned are great i and few others belong to the us one has alot uk members its free and has instant chat. saying that alot on here who have stayed as have lupus and ra. im still having test as u may know about get results for hughes etc,u take care. il pray for u. my dad,gran and great gran all had/have lupus. i tested postive for ana but its more down to the criteria list of whihc are 11 sytpoms one ahs to ahve been found to have 4 of those to gain diagnsois. you must be feeling very shell shocked,but there is hope it is treatable. welcome to email me also. masage4u@ntlworld.commuhc much lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I'm not surprised you're feeling shell shocked and who cares WHERE you posted this! Give yourself time to grieve for all the things you feel you have lost and then hopefully,you will begin to see a light at the end of the tunnel. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Hi Angel
I'm so sorry that you've had this news on top of everything else, you must be in a really dark place at the moment, but I hope that soon things get much brighter for you and life gives you something to look forward to. After all, at 50:50 it's just as likely that you haven't got Lupus as that you have, so I hope that's the way things turn out.
Anthea x
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Angel
I'm sorry you've had something else to knock you down. Hopefully you'll get the diagnosis sorted soon, and things should then improve.
Please carry on posting, you're not in the wrong place.
Lyn
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 854
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Lots of hugs for you Angel. You are not in the wrong place. You are in the right place to find support and advice re any problem.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Really sad to hear this, Angel.
You are NOT on the wrong forum - others on this site have Lupus. Don't even think of leaving us.
MUCH love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I feel so very sorry you are having to deal with all these things at once Angel. I bet you feel like you have been hit by a demolition ball. Please take care and keep us up to date on how you are doing.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Angel, Very sorry and sad to hear this, but please, like others have said, don't think that you don't belong here. Lupus like RA is an inflammatory condition with lots of associated similarities, so, stick with us Sending you gentle cyber hugs, love, Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Angel, sorry you have more to deal with now. So sorry for your loss too, you must be so shocked and worn out with everything. I am being tested for lupus too, like Jenni says theres no one test, so its hard to diagnose. Melly is the same, just tests and more tests. Dont worry about being on the "wrong forum" no one worries about things like that, you just keep us informed of whats happening with you, and check the sites Jenni mentioned, I have joined a couple myself. I hope you get answers and that you can look forward after all the sadness. x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Angel i have RA and Lupus and would agree with Barbara the two diseses are very similar , dont think your on the wrong site as every one on here understands , hope you get your dx sorted soon
Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Angel The path trodden by many unfortunately! The only way for a firm diagnosis is for the tests to be done but with the results will come a plan of action for the future, one without uncertainties. You will be prescribed suitable drugs to help you cope and improve. With improvement will come hope and everything you dream of. As rotten as it now feels, with the odds seemingly stacked against you, you are turning the corner. Try to be positive and hold onto your dream. Your family will come but get well first, (don't forget I have had RA 22 years and in that time have had three healthy kids) it is very do-able. Pecker up, you will come through this a much stronger person. Take care, please keep posting and let us know how you are doing. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Angel,
I know you must be devastated and very shocked to hear this new dx and i truly am so very sorry to hear this.
Women can have safe and successful pregnancies with Lupus, I have a friend who has severe Lupus and had a baby girl.
Of course you are not on the wrong site, we are always here for you any time!
I have had all my babies with RA, like Lyn says, it is 'doable' and you will gain much support and help.
Losing babies has to be one of the greatest and deepest griefs known to women, I still think and pray for my lost babies every single day. It *will* become slightly more bearable as time goes on.
You are very welcome to e/m me if you like, I don't have Lupus, but have lived with RA nearly all my life...littlepetal@gmail.com
Much love,
Amanda
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