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At a loss...

Discussion in 'Tech and test' started by blueherron, Aug 7, 2014.

  1. blueherron

    blueherron Registered

    I just got back from Cleveland Clinic. I was was diagnosed with Lupus over 4 years ago with a positive Anti Smith and Positive ANA. They are now telling me I do not have Lupus, bases upon that sometimes my ANA tests higher than others over the years. They said that your ANA has to be VERY high all the time. I emailed the "Lupus foundation of America" about this. They very much disagree and say it is extremely common for ANA to go up and down.I have almost all the symptoms of Lupus. Very classic signs. So have no idea what to think?
    I also had a Lupus Anticoagulant test done that I can not figure out.If anyone could give ANY input I would be extremely grateful. This has just been an insane roller coaster to say the least. Thank You so much!
    These are the test results for the Lupus Anticoagulant Test:

    [TABLE="width: 690"]
    [TR]
    Component Your Value Standard Range Units Flag [/TR]
    [TR="class: odd"]
    [TD]Beta 2 Glycoprotein, IgG[/TD]
    [TD]
     
  2. momof2boys

    momof2boys Registered

    I understand your frustration. I was just seen at the Mayo Clinic for multiple pulmonary embolisms, I was diagnosed with Lupus 8 years ago. I have been fortunate in that my lupus symptoms have been manageable for the past 2 years, however the pulmonolgist wanted the rheumatologist to see me to make sure all the blood clots were not from a lupus flare or just lupus in general. After seeing them they decide to tell me I didn't have lupus either. Honestly I don't care what you call it, but if tell me I took methotrexate for a year for nothing, that will really make me angry (it really made me sick)!! In the end after numberous tests, biopsy's and hospital stays the final determation was long term prednisone use and lupus! Sorry I can't help with your labs.
     
  3. blueherron

    blueherron Registered

    momof2boys, WOW! I completely feel the same way!! I have been on Methotrexate as well! Also Sulfasalzine and Plaquinel. Can I ask was your determined the same way? That you did not have a positive ANA currently. I feel completely sickened too. If it is not Lupus,then what is it? If not, which I just cant see, those are some MAJOR meds we have been on, that do bad things to our bodies, for what?? I'm so sorry you have had the same. I wonder if they have changed the guidelines for diagnosing Lupus? Just don't get it at all!! I feel more lost than when I went.
     
  4. keebler

    keebler Moderator

    Hi blueherron and welcome to the site.

    Yes ANA's can go up and down. Mine went negative when it was checked. I still have lupus.
    Here is a link that they use for diagnosing lupus.

    https://www.thelupussite.com/dxlupus.html

    The doctor that you saw is your current rhumey?
    We have members who have gone for a second opinions.

    Sorry I can not help you with labs. They vary so much that only your doctor can interpret.
    Take care,
    Lyn
     
  5. debatat

    debatat Moderator

    Hi, firstly ANA titres can fluctuate with each blood test, meds, flares etc can all have an effect on them. A diagnosis of lupus is not solely based on an ANA test it is based on crtiteria and symptoms, which you clearly had and still have. Sounds as though you need to find a new doctor maybe?

    Your lab tests are saying that you have tested positive for one part of a condition known as APS or Hughes syndrome. It is recommending that you get tested again in 12 weeks to see if you are still positive in accordance with the clinical guidelines. They are also asking your doctor to check your symptoms and history. Here is a link to more info on this illness which is often found in conjunction with LUpus.

    http://www.hughes-syndrome.org/resources/factsheets/HSF-APS-AHS-What-is-Hughes-Syndrome.pdf

    http://www.hughes-syndrome.org/resources/factsheets/HSF-APS-AHS-What-are-the-Symptoms.pdf

    http://www.hughes-syndrome.org/resources/factsheets/HSF-APS-AHS-Diagnosis-How-to-get-tested.pdf

    http://www.hughes-syndrome.org/resources/factsheets/HSF-APS-AHS-Treatment-and-Medication.pdf

    I hope this helps. Feel free to ask if you have any more questions.
     
  6. ChefMegan

    ChefMegan Junior Member

    I am shocked that you got such a response from a Dr. at the Cleveland Clinic! ANAs can fluctuate and are not relevant to whether or not your lupus is active. DsDNA is more likely to fluctuate with disease activity, but that isn't even true 100% of the time. I can understand why you are so frustrated. I'm reading a book about Lupus in the first year right now, and one of the things it talks about is how frustrating it is for patients and how often most of them are diagnosed, then undiagnosed only to be rediagnosed again. It suggests picking the Dr, who you feel is correct and sticking with that one, and that Dr's diagnosis. I'm sorry you're going through this!
     
  7. blueherron

    blueherron Registered

    I can not even express how much your kindness, support and validation mean to me!!! WOW, so nice to be heard, believed. Thank you for the links!! Very helpful, and for the welcome to the site:) THANK YOU!!! That was a an extremely hard week at Cleveland. And it's scary to think they that position that you don't have Lupus if your ANA, is not positive, ALL the time. But they were very determined to make me believe this. I'll post a pic, that I now have... "History of Lupus" as a diagnosis from Cleveland Clinic?!!! I did go see my primary Dr., for a follow up visit about Cleveland yesterday, she was flabbergasted! To say the least. She 100% thinks I have Lupus, and highlighted on my chart. She is a gift. I have been in a bad flare, so when I just read the replays, well tears flowed. Lupus is hard enough to even deal with on its own, so to hear that you no longer have it? They basically very much make you feel like you and your doctors at home are nuts, I can't even express. Tough stuff. Thank you for helping explaining the test too, EXTREMELY helpful!! Looks like will need to have it retested.I know my Primary Dr. knows and you all were so great in supporting and explaining that ,YES, I have Lupus. I needed that! Thank you! My Primary is considering sending me to Mayo, I have a lot of neurological problems... We shall see.. This is their diagnosis from Cleveland...
     
  8. dmarie

    dmarie Registered

    Hi blueherron,

    So, according to this, you do have Lupus? I would get all the notes and reports from them. I think the notes say a lot.

    Speaking from experience, what doctors say and what they write are two different things.

    I hope everything gets sorted out. Soon.

    Take care and keep us posted.

    dmarie


    my ANA(positive again) and antiDNA (been negative awhile) fluctuate depending on treatment. Has never changed my SLE diagnosis.
     
  9. momof2boys

    momof2boys Registered

    Sorry it's taking so long for me to reply, but no I did not have a positive ANA so that is why the Dr said I didn't have Lupus. I had been on 20-60mg of prednisone for the past 8 years, I had been told by another rheumy my ANA would not be elevated with that much prednisone. At the end of it all we are calling this lupus. Sometimes I think we know more than the Dr. We study and research our disease and make sure we know everything we can, I don't know that all Dr do that.
     
  10. blueherron

    blueherron Registered

    Thanks Dmarie! I have all the notes and sadly they say I do not have it. I don't know if it's a new thing at Cleveland Clinic? I had the Internist say it , he was the first Dr. I saw, it put this in my chart. I then saw the Neurologist and the Rheumatologist, who both said the same thing!? They all had reviewed the Internist notes however.They all said that the ANA was not high enough in every single test over the past 4 years. That's why I am SO blown away! But every site, every person, including my Dr. has never heard of this as being the case to say you don't have Lupus any more? Momof2boys, no worries! Believe me I get it:) I want to say that at the Lupus conference I went too, I VERY MUCH understood that are not just going by the ANA even if it's negative. That if you have many of the symptoms, then people need to start being treated. I believe SO MANY people are not getting diagnosed, that that have Lupus. It's all too confusing. Because you are so right, WE KNOW!!
     
  11. debatat

    debatat Moderator

    Just to say that Hughes syndrome can cause neurological symptoms, especially the Lupus anticoagulant. It can mimic MS symptoms. So make sure you get retested. I am so glad you have such a supportive doctor who clearly can see what is going on with your body.
     
  12. blueherron

    blueherron Registered

    Thank you Debatat! That is VERY interesting! Had no idea! That is very helpful to know. I will make sure I get it done. Yes, I am so blessed to have my wonderful Primary. It took so long to find a good one, as I'm sure you all have been multiple docs as well. She is a true gift!
     

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