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Thread: Suspected Lupus

  1. #1
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    Default Suspected Lupus

    I have been diagnosed with RA for a few years, but now it seems more is going on. My ANA is 1/320 and the doctor is talking about lupus.

    Is that level of ANA likely to be lupus? I am actually seeing an MS doctor, who is kindly trying to sort things out for me. My Rheumy took me through all the standard meds and told me I had failed them all.

    I always hate it when they say I FAILED a medicine? It seems the other way around to me.

    I have horrible pain in my spine, back, abdomen and multiple joints. The fatigue is devastating,I am so weak. They thought I had CA because of multiple enlarged lymph nodes in my abdomen.

    Does any of this sound like lupus to you? I am not asking for a diagnosis, just what symptoms could be due to lupus.

    You all seem so helpful. I have been reading here for a while. i go tomorrow for a lumbar puncture. wish me luck with that.

    Thanks for reading, ea

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    Default hi

    Oh goodluck for tomorrow and yes you sound like me and many here.Lets hope they get you a diagnosis soon.I'll be thinking of you tmrw.

    lots of love
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Default

    hi elizabeth. Welcome to our family. I am glad that you have been reading our posts and that you decided to join........I am apalled at your dr. telling you "failed the medications". I have no idea what that is supposed to mean other than he is trying to blame you for his inability to help you feel better. I hope the MS dr. can help. If you have any questions about the different medications that you supposedly failed, or any options that your new dr offers, we will be happy to try to help.........Yikes, so sorry that you have a lumbar puncture tomorrow. I will definitely be thinking about you. Take care and keep us posted.
    Phyllis

    share a smile today

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    Default

    Hi Elizabeth,
    I tested positive to more than one autoimmune issue, too - RA, Lupus, Psoriasis and Sjogren's. My rheumy called it Mixed Connective Tissue Disease.
    Perhaps you might want to ask about it, if the doc doesn't mention it.
    Good luck with the lumbar puncture tomorrow - doesn't sound fun.
    Check back in and tell us how it goes.
    Welcome to WHL!
    Hugs,
    Marla

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    Default

    Elizabeth, just wanted to let you know I'm thinking of you today, too. I hope your procedure goes well and you get some clear answers soon.

    I know what you mean about the medications and him telling you that you "failed" them.. I agree, it is the other way around, THEY failed YOU because they didn't help you.

    Unfortunately, it's terminology that doctors and insurance companies use to discuss the successfulness of a particular medication when given to a certain patient. I don't think though that they realize all of the time just how their lingo and jargon can effect us. Even being "in the medical field" myself (or soon to be at least, LOL), I don't like hearing things said certain ways. It's fine to write whatever it is you need to documentation-wise in a chart, but some medical professionals need a class on tact and actually talking effectively and therapeutically to patients! I'll um, be getting off of my soapbox for now..


    Good luck today!
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  6. #6
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    Default

    Welcome to WHL! I'm so sorry you have to endure a lumbar puncture today. Please let us know how you're doing afterwards Hopefully, it won't be for naught and you'll get some answers (and quick!)

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    Default

    Hi Elizabeth
    Welcome to WHL! I hope you are getting the knews/diagnosis you are looking and wanting finally!

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    Default Dear Elizabeth

    Dear Elizabeth, I am a newbie too. Best wishes sweet baby. Let us know who it turns out. Sher

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    Hi Elizabeth,

    I too was diagnosed with RA several years ago, kind of lost track of when. I was on Arava for 1yr it stopped working for me. then I was put on Remicade and Methotrexate which worked for almost 9yrs until it quit working in May 09. In July they put me on Enbrel, which I had horrible side effects and allergic reactions too. So maybe that is what he meant to say instead of they "failed on you" My Dr. called it drug burnout. I have been in a flare for over 6 mo now. In July 09 I saw my new rheumy because mine retired. He did a full workup and x rays and told me I don't have RA, I think you have SLE. Ok I said, so now what? He told me his official diagnosis at this time was undifferentiated mixed connective tissue disease. He started me on Plaquinil 400mg and a prednisone taper starting at 25 mg. My flare has been HELL!!! I hurt everywhere it seems like. Also seems like it's one thing after another that just appears when ever it feels like it. I had the butterfly rash last month for 3 days. I know that isn't very long but it helps with the true diagnosis. During the rash I got pneumonia, and almost landed myself in the hospital. I was in the ER for 7hrs. they raised my prednisone to 60mg tapering down by 20mg every 3 days until back to 10. I just saw my rheumys PA yesterday and was told my body was FULL of inflammation. I pretty much knew that cause of the PAIN. She changed my diagnosis to SLE. anyway, she raised my prednisone back up to 20mg with a longer taper. 1 month tapering back down to 10mg. My joints hurt all the time. Now I find out I have tendonitis on top of it all, which she said can be connected to lupus. So I understand what you are going through, I think we all can. I am so sorry you are feeling so poorly! I can totally relate!! We are all here for you anytime you need some support or just to chat. Welcome to the group! Hope to talk to you soon!
    Jennifer
    Dx. SLE June 2009


    ♪ Jen ♪

  10. #10
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    Default

    Hi everyone. Thank you all for the responses and concern show. I had the LP yesterday and it went ok, but I got the headache associated with the procedure. I have been laying flat and drinking lots of fluid for the last 2 days.

    It is a good thing that I have pain meds because they didn't give me anything. This has got to be the worst headache I have ever had. They got a good sample though, so I hope it helps them sort things out.

    I don't know how they sort these autoimmune diseases out sometimes as they are so similar and a lot of people don't fit into any convenient category. I guess that it where mixed connective tissue disease comes in.

    I have been sick for 17 years really and have had a few different diagnoses. They have used FMS, CFS, RA, myofacial pain syndrome, tendonitis,etc. The only thing I am sure of is that it involves severe inflammation and responds to steroids. Nothing else has helped.

    I got the diagnosis of RA from an MRI of my hands that showed inflammatory destruction of the joints. After that, I was tried on most of the RA drugs with no help, but lots of side effects. I am just on 5mg. of prednisone now.

    I have told my rheumy that whatever it is, it is involving my spine because the spinal pain is extreme and keeps moving around. Finally, I had an MRI of the brain and it showed 70 demyelinating lesions. That's how I got to an MS doctor. The problem is that I don't fit into the MS box well either. I have been running a fever for about a year now and they cannot decide why, low grade-99.6-100.6.

    The MS doctor is working hard and I appreciate him so much. I just don't want to hit another dead end because I am going downhill rapidly. I am having a lot of cognitive issues and that kinda scares me.

    Well, it's back to lying down flat again. Thanks so much for your kind responses and thoughts. ea

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