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Thread: Stripped of my diagnosis : (

  1. #11
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    Quote Originally Posted by chikititalinda View Post
    Wow I didn't know Plaquenil can cause false negatives. I will ask him about that. AS far at the gastroperesis goes, that was one of the reasons he was certain it was lupus as he said both, that gastroparesis and the avascular necrosis can be caused by the Lupus. What did you take for it?
    Your thread as helped me refering symptoms i'm going through identical to Gastroperesis and my doctor's having a full print off about the condition and things it causes me which i have and i've also had.

    Terri xxx
    Last edited by Peridot20_Gem; 05-09-2011 at 03:32 PM.

  2. #12
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    just read the thread and wanted to pass on something that was said to me at the E.R. today. My E.R doctor was very sympathetic to what was going on with me and even though i am only dx ed around 3 months he never questioned my problems and he linked the Pluerisy to the Lupus. But while i was waiting to be taken to Xray a R.N came in to talk to me and asked me was i actually diagnosed with Lupus are was my doctor trying to work it up and piece a dx together..Then she said she took Plaquenil but for R.A and it was a miricle for her but at first it was thought she had lupus but she couldn't get enough criteria. Maybe i took it wrong but she seemed quite hostile about it? Well hey, i would gladly give her mine. Then she said i must be mistaken because my Rheumy had given me Methotrexate first and that was never used for Lupus, just R.A.. Anybody have a thought on that? Anyway i didn't mean to high jack a thread but wanted to say that she said i couldn't get a diagnose that quick because it took at least severn years of non stop symptoms and work up to get a Lupus dx. Some people just suck dont they? I hate a freakin know it all. I see so many on here that get diagnosed then undiagnosed that it's just crazy. Nancy Hanger the Author of " The First Year of Lupus", said in her book that she had been done this way dozens of times and had gotten to the point that she knew what she had and just went on. If my Doctor changes his mind when i go back in June..........Well all i can say is it'll be the day i tell him otherwise.

  3. #13
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    Ah ah ah woman your ill take it easy.lol

    Mind you know it alls do get me down and my tongue bounces of them, can't be doing with it and your not gate crashing the thread your giving a good opinion on it actually.

    Everyone is messed about bad one way or another and that includes myself but the trouble is our lifes are in their hands and that's how they play ball with us.

  4. #14
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    Hey Terri. YOu are so right about that. And you know i have found alot of times it's the wanttobe doctors that are so free to give all of the advise. Dont get me wrong, my daughter is a R.N. but i've already given her fair warning that if i ever hear of her treating people like some of them do that i will gladly set her straight. Heck one of my doctors secretarys tried to tell me something that i knew wasn't right about my medication. Okay can you people tell i'm in menopause[He he

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    Oh mate you do make me laugh and i love that sense of humour. Dow worry according to men every woman is going through the menopause daily, i hold out my hands everyday waiting for my hubby's head to arrive.lol

    Your right what your saying these under study doc's are the ones who go to the full limit if they're allowed to do so on one person, as it's another score added to their careers. I could just imagine your poor daughter getting the ear bassing by how you talk like me.

    I won't have none of that nonsense with secretry's from my GP or anywhere else advising me or asking question's as i do turn quite nasty because in my book i'm the suffer i should'nt answer to outsiders only those i'm dealing with.

    Good point made there mate.
    Last edited by Peridot20_Gem; 05-09-2011 at 04:16 PM.

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    I didn't get an x-ray when I had symptoms of pleurisy. It was hurting me in my back side when I'd breathe in normally, breathing out didn't hurt, just breathing in caused sharp pain. I had another ER doctor tell me before he thought I had pleurisy too but he didn't do a test. Found out yesterday my twin sister has lung disease and several spots on her lungs. My rhematologist did not acknowledge either pleurisy or gastroperesis as a symptom of connective tissue disease. She said fluid on the heart or lungs was a symptom, but did not say lung or heart disease in itself was a symptom, or any GI problems.
    Last edited by merryalliss30; 05-09-2011 at 04:22 PM.

  7. #17
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    Hi Maryalice, doesn't it feel like sometimes the Rhematologist are diagnosing with a Quja board? I like mine alot but it seems like when you ask a question it's like they go a hundred different directions and never give you a answer. I think the E.R doctors are will more freely discuss it because they know they dont have to deal with the Lupus dx, just treat short term for the moment. The symptoms you had are exactly what i had with pain in chest,back and side when breathing in. He said alot of the time he could hear a rubbing sound from Pleurisy but not always. I do beleive though that the xray was done purely for the Congestion i had in my chest and Bronchial tube. Plus my oxygen had gone down to 85 at the time and they gave me oxygen. This doctor did tell me Pleurisy was a very commom thing for Luspus Patients. One thing i have picked up on from all of my doctors is the statement that alot of things are not actually symptoms of the Lupus, but that the Lupus sets your body up so that you are more supseptible to have these problems. That other diseases can cause the same things and that is why it is so hard to pin point since there's no one real test that says you for sure have it.. I dont know if that makes since to me or not. It's all pretty confusing isn't it?

  8. #18
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    Quote Originally Posted by maryalice40 View Post
    I didn't get an x-ray when I had symptoms of pleurisy. It was hurting me in my back side when I'd breathe in normally, breathing out didn't hurt, just breathing in caused sharp pain. I had another ER doctor tell me before he thought I had pleurisy too but he didn't do a test. Found out yesterday my twin sister has lung disease and several spots on her lungs. My rhematologist did not acknowledge either pleurisy or gastroperesis as a symptom of connective tissue disease. She said fluid on the heart or lungs was a symptom, but did not say lung or heart disease in itself was a symptom, or any GI problems.
    Hi Maryalice,

    i had all those symptoms with pleurisy as i've had it several times and when it gets severe it goes actually into your shoulder's also, they soon had me in hospital for a week, they're surposed to x-ray you and take bloods to see how far it's gone, my doctor told me that once you've had it once it does keep coming back but that's disgusting how they ignored you with tests.
    What your sister was diagnosed with yesterday and i do feel sorry for her because lung disease and fluid on the lungs are all connected with the heart and my rheumo asked me if i'd had these symptoms besides having DVT and now i'm on asprin, as a good 80% of people who have had clotting or even on the lungs do have them coming back also and they are to do with autoimmune disease.

    I'm not being funny but i'd persist on still getting yourself checked with your rheumo if possible.

  9. #19
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    I think doctors rely a little too much on other blood work and ignore the big one, the ANA tests. If that test goes up and down in the course of how you feel and during treatment, it should be used as diagnostic criteria. If you've had a long term illness, a doctor shouldn't dismiss that either, when it's obvious your not getting better. My lung pain I had went up into my upper thoracic for a couple of days but not in my shoulder. I would have been more attentive at getting the right tests done when it was needed if I had known it was such a big deal to getting this diagnosis. But I went for a very long time without a clue to why I felt the way I did. And I am still not 100% positive, but I am 75% sure, lol. I'm just going to wait and see how well I respond to Imuran and plaquenil. If I don't respond, I am going to have to face the facts that nothing is going to help this wrenching fatigue I have. At which point I will probably completely lose my mind.

    The things I have been told that link to an autoimmune disease through a rheumatologist are high inflammatory markers, low RBC, WBC, & platelets, fluid on lungs & heart, raynaud's with sausage fingers, rashes, and joint swelling. She decided to ignore my low WBC's, I just didn't have enough things in my blood work to fit the criteria. It is interesting to here that more things are linked to it than I was told. I'm not interested in seeing another rheumatologist again, no thank you.

  10. #20
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    MaryAlice i truly understand your resistance to the Rheumy. From all the post on here most everyone gets that way some time or another. When i went for my first consultation my symptoms were joint pain,leg swelling and dry eyes,skin and mouth. And a horrible fatique. Out of all of the blood work that i had the only thing that came back positive was the double stranded anti- dna. Those are the things he is basing my Lupus dx on for right now. But who knows if it will be the same diagnosis when i go back. But i am logging every little thing down that is happening to me and taking pictures of every rash and blister. This time i will go back armed. Hopefully you meds will work wonders for you.

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