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    Default Hi, another new member

    Hi all

    I'm not sure what I'm doing here but an internet search led me to the forum.

    I was diagnosed with Lupus 18 years ago and then about two years after when I was much better I was told that my blood tests had returned to normal so it couldn't be lupus after all. A happy and relieved girl I was.

    Last week I developed some lupus type symptoms when I came down with a cold virus(severe fatigue rash and sore feet) and have been to my gp today to try and calm a mounting panic and arrange for tests.

    I've been sent away with cream and antihistamines for the rash and advised to come back in 2 weeks if it hasn't gone. Standard immune blood tests are arranged for Friday but for some mysterious reason unknown to me the gp said she wouldn't do the ana test.

    Researching today it seems that normal blood tests do not mean that Lupus was misdiagnosed, they can be normal in remission. Is this correct?

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    Hi Stef and welcome to WHL! We are so glad that you found us! Although I don't want to alarm you I will tell you that blood work in Lupus patients fluctuates. That is one of the reasons that many Lupus patients have a hard time getting diagnosed. Sometimes the meds will get them under control, sometimes a period of remission or a less active period will allow them to return to normal but Lupus itself doesn't simply go away.

    There is no need to panic though. If you have been in a period of remission for 18 years then most likely they will be able to get yours back under control. I would like to say that I am shocked that the doctor didn't do an ANA test but I am seldom shocked by doctors anymore. Try to relax (I know, easier said then done) and wait for the test results. As you most likely know if it is Lupus stress will only make it worse. The good news is that you have found us now and we will be here for you if you need a place to vent, talk, laugh or cry.

    Welcome aboard!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Unhappy

    Quote Originally Posted by tgal View Post
    Hi Stef and welcome to WHL! We are so glad that you found us! Although I don't want to alarm you I will tell you that blood work in Lupus patients fluctuates. That is one of the reasons that many Lupus patients have a hard time getting diagnosed. Sometimes the meds will get them under control, sometimes a period of remission or a less active period will allow them to return to normal but Lupus itself doesn't simply go away.

    There is no need to panic though. If you have been in a period of remission for 18 years then most likely they will be able to get yours back under control. I would like to say that I am shocked that the doctor didn't do an ANA test but I am seldom shocked by doctors anymore. Try to relax (I know, easier said then done) and wait for the test results. As you most likely know if it is Lupus stress will only make it worse. The good news is that you have found us now and we will be here for you if you need a place to vent, talk, laugh or cry.

    Welcome aboard!
    Thanks Mari

    I'm feeling somewhat distressed, you have confirmed my fears.

    There are some things that I have worried about over the years such as having the most terrible memory and concentration, I guess that wouldn't be so odd for someone with lupus.

    My blood tests are arranged for this Friday with the nurse, I haven't had them yet. I'll try and get her to do the ANA. Is there anything else specifically she should test for? It's been so long I've forgotten a lot.

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    The nurse is not going to be able to do any test not ordered by a doctor. Have you considered going to a rhuemy? They would do all the blood work for autoimmune issues there. Not saying it will or won't comeback showing anything but at least you would know they were done. You will find many topics in this forum about people who fight the blood tests because they go back and forth and a few about ANA negative Lupus.

    I know this is scary. I understand you feel like your life is spinning out of control at this moment and you are not sure how to stop it. Try not to look too far out in the future. Right now we are going to take one day at a time. One step at a time. Take a few deep breaths. It is going to be OK. Others will be here soon and all of us will be here for you as you go through this process.

    As for the memory issue... you might get a laugh if you read the "You know you have brain fog if" thread in Laurie's Lounge
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by tgal View Post
    The nurse is not going to be able to do any test not ordered by a doctor. Have you considered going to a rhuemy? They would do all the blood work for autoimmune issues there. Not saying it will or won't comeback showing anything but at least you would know they were done. You will find many topics in this forum about people who fight the blood tests because they go back and forth and a few about ANA negative Lupus.

    I know this is scary. I understand you feel like your life is spinning out of control at this moment and you are not sure how to stop it. Try not to look too far out in the future. Right now we are going to take one day at a time. One step at a time. Take a few deep breaths. It is going to be OK. Others will be here soon and all of us will be here for you as you go through this process.

    As for the memory issue... you might get a laugh if you read the "You know you have brain fog if" thread in Laurie's Lounge
    I have to have a referral from the GP to get to the rhuemy. It's been a long time since I saw one and I've been discharged and moved since so sadly I can't just go back to the old one. I might be able to get the nurse to speak to the gp on Friday to agree to the test. It's worth a try.

    Thanks, I'll have a read of that thread and see if I can lighten up a bit! I have two reports to complete by Friday and should really be getting on with them. Ho Hum!

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    Quote Originally Posted by Stef View Post
    I have to have a referral from the GP to get to the rhuemy. It's been a long time since I saw one and I've been discharged and moved since so sadly I can't just go back to the old one. I might be able to get the nurse to speak to the gp on Friday to agree to the test. It's worth a try.

    Thanks, I'll have a read of that thread and see if I can lighten up a bit! I have two reports to complete by Friday and should really be getting on with them. Ho Hum!
    Good progress this morning. The nurse agreed to add the ANA test to the routine inflamation indicator tests the GP suggested.

    I had great fun reading the 'You know if you have brain fog...' thread. I shed a tear or two to find that I wasn't a total idiot to forget to add the lemon and orange zest to my Christmas cake and have to take it out of the oven quick and stir it into the mix in the tin, and I'm not the only one who can turn a room upside down searching for a phone or keys that were there a second ago when they were in my hand the whole time!

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