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Thread: Am I just overreacting?

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    Angry Am I just overreacting?

    Autoimmune diseases run in the family(my grandmother had RA my dad has vitiligo)
    My ana's are positive(the rheumie referred to this test as the 'lupus test')
    I have shoulder&neck pain, canker sores, fatigue and my throat is almost always swollen(he said that lupus doesn't affect the shoulders)

    All he said was that the tests for lupus were negative. He didn't explain the results of the tests. He sent me for an x-ray and said to call him if my shoulder pain gets worse. I keep telling him my neck is worse than my shoulders, but he doesn't seem concerned about it(which makes it hard to even drive, I can't turn my head all the way in either direction)

    When I was sitting in the waiting room a girl ran out crying and slamming doors because he called her fat for the 5th time.

    I'm really unhappy with this rheumie. I'm thinking about getting a second opinion at dartmouth. My shoulders are feeling better and i haven't had a canker sore in two months. I suppose it could be remission, or it could also have just been a self-limiting problem. What would you guys do?

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    First off definately get a new rheum. I have been putting it off for so long and I'm just aggravated most of the time when I leave her office. Second I think with a positive ana and symptoms theres a chance that you have some kind of AI disease. I would also look into fibro because I have heard and read that some of the spots that it affects the most is in the neck and shoulders. I hope you find someone who listens to you better and figure out what it is you have so you can start treating it!
    Last edited by ritzbit2; 04-02-2012 at 05:56 PM.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    Quote Originally Posted by lovelyophelia View Post
    Autoimmune diseases run in the family(my grandmother had RA my dad has vitiligo)
    My ana's are positive(the rheumie referred to this test as the 'lupus test')
    I have shoulder&neck pain, canker sores, fatigue and my throat is almost always swollen(he said that lupus doesn't affect the shoulders)

    All he said was that the tests for lupus were negative. He didn't explain the results of the tests. He sent me for an x-ray and said to call him if my shoulder pain gets worse. I keep telling him my neck is worse than my shoulders, but he doesn't seem concerned about it(which makes it hard to even drive, I can't turn my head all the way in either direction)

    When I was sitting in the waiting room a girl ran out crying and slamming doors because he called her fat for the 5th time.

    I'm really unhappy with this rheumie. I'm thinking about getting a second opinion at dartmouth. My shoulders are feeling better and i haven't had a canker sore in two months. I suppose it could be remission, or it could also have just been a self-limiting problem. What would you guys do?
    First thing I am going to tell you is that there is NO test for Lupus. Right there your doctor showed how little he knows. The lack of a test is one of the reasons that it is so difficult to diagnose this disease. In order to diagnose this disease you must meet the requirements which you can find on this forum under Criteria For Diagnosing Lupus

    As for the rest of it you must remember that none of us here are doctors however Lupus, and other AI diseases, can attack almost any part of your body. Add Fibromyalgia to the mix and there are multiple things that could be a factor in how you are feeling.

    I say go with your gut and fire this doctor. It is time to find one that knows what he is doing.
    Mari

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

    ~Winston Churchill~







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    That's what I thought. I think he called it the lupus test to dumb it down for me, which is insulting. I've been doing my research, reading scientific studies and talking to people with lupus, so I have a pretty good idea about what the tests are.

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    Basic tests that can point towards AI diseases is an ENA panel which tests for many different antibodies aside from just the ANA. If any of them are positive as well it can help point towards different diseases. Blood work wise they can also check for things like an elevated SED rate or in my case CPK which is a muscle related test. These kinds of tests show inflammation but not everyone even has signs of inflammation in their blood work at all. If the blood work doesn't "show" anything then a diagnosis can be made with other symptoms such as fatigue and joint pain ect. Its a combo of both of those things. For me I was sent to a rheum when my raynauds started to cause ulcers and the blood work came back a mess so they knew I had an AI disease and she was pretty postive it was SLE but didn't officially give me my dx until a few months later when I started having joint pain and swelling on top of the raynauds and fatigue and blood work. I hope that you find someone who actually explains what all is being looked at and what it all means. Its their job to keep you informed. Its YOUR body you should know what all is going on with it.
    Last edited by ritzbit2; 04-02-2012 at 05:57 PM.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    I think that I would see about getting another opinion, I went to a rheumy and he treated me like dirt and even told me that it was because I didn't have any insurance needless to say I don't go back to him. I would check out another one just to be safe.
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
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    Hello,

    I would definitely look into seeing a different doctor. Doctor's are supposed to be there to help and enhance life, if you're going to someone, whether they are the best in their profession or not, they will not be able to help you if they don't understand you. My diagnosis was put off for years because of a doctor that would not listen and not take me seriously. You know your body and ultimately YOU are in control. Also, I recommend getting copies of your blood work. Although I have recently driven myself a little crazy by comparing my ranges online, it's a useful tool for understanding what's going on. You will also be able to take the blood work to a different doctor and hopefully won't have to wait to get more blood work done.

    I wish you only the best!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    Quote Originally Posted by theLword View Post

    Although I have recently driven myself a little crazy by comparing my ranges online, it's a useful tool for understanding what's going on. You will also be able to take the blood work to a different doctor and hopefully won't have to wait to get more blood work done.
    This is me all the time lately and I'm really aggravated because I have gone to see my rheum a few times not feeling well and having swelling and such going on but she says "your blood work looks fine" so I go and look at the tests she ran and they look INDENTICAL to results from those same tests a year ago when I was in a terrible flare. So I'm really confused as to what it is she looks for in my blood work to determine if I'm sick or not.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    I've found that some docs only do the bare minimum in the lab work, and say "it looks fine", while others will make more of an effort and will look at more than just the usual lab tests.
    Hugs,
    Marla

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    Well, my ana's are positive, high but "not skyhigh" ds-DNA negative, and ENA panel negative. I'm being tested for hypothyroidism now. It just baffles me that I can go from unable to put on my winter coat without extreme joint pain to fine again twice, and still be told it's nothing. I haven't had any problems with the malar rash so I'm being told to wait and see and call them. It's just so frustrating! I want to know why I'm tired all the time and get headaches and canker sores.

    My GP told me that even if I wasn't in a flare, the test results would show something.

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