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  1. #1
    Join Date
    Jun 2004
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    Default Frustrated

    Hello everyone.

    I believe I posted on this forum a long time ago, but I'm in need of answers again.

    I've been feeling bad for about 5 years now. In high school I suffered from severe chronic migraines and had lots of problems with endometriosis. I've dealt with both problems but have never felt quite like myself since then, which makes it hard sometimes to figure out if I might have a new problem or if the same issues are acting up again.

    Now though I'm pretty sure something else is going on. I started to feel worse in November, my energy levels were declining significantly and I was feeling nauseaus a lot. My body became very achy, especially in the mornings and I was having frequent headaches.

    No one has had a clear answer for me. I've been bounced around from primary care doctors, to endocrinologists, and gastroenteroligists. I keep having abnormal test results and tons of symptoms but no one seems to be able to connect it all together. I've had a few weird blood sugar levels, but they ruled out diabetes, ketones in my urine at several points, along with protein and white blood cells. High cholestoral, high sodium, low potassium, low B12, elevated cortisol...

    My problem is each doctor seems to be picking out one specific test/symptom he/she finds important and ignoring everything else. 3 doctors have given me prescriptions for acid reflux medicine. No one seems to think my body aches and stiffness are important and I haven't been able to get anyone to take swelling on the left side of my back below the rib cage (Kidneys maybe?) seriously, nor the frequent swelling of my fingers.

    I don't know that I have lupus although several friends and family members have suggested it as a possibility. I'm looking into conditions that affect the whole body though, since so many of my tests and symptoms seem unrelated.

    Have most of you here had similar problems with getting doctors to pay attention to all of your symptoms? Should I find a new primary care doctor who does not have a specialty? Also, have you had trouble figuring out if feelings you are experiencing or symptoms worth describing to your doctor? For example, maybe my fingers swell because its hot or I haven't drink enough water. I'm intchy a lot, that could be a symptom of something, or maybe my skin is just dry...I think my problem is I've been feeling bad so long I'm not sure which feelings are "normal" anymore.

    Thanks for any help and advice


  2. #2
    Join Date
    Mar 2005
    Thanked 1 Time in 1 Post

    Default Welcome aboard

    and great timing as well since the site just came back (thank you so much for that admin!).
    Have you seen a rheumy? I didn't see that on your list of drs. If not that may be the one you need to tie everything together. Lupus affects everyone so differently that it is hard to diagnose, it took me 7 years to get diagnosed. But you have to be very stubborn cause it's your health. Make a list of your symptoms, anything you think is odd. Get a copy of your labs and stuff and find a rheumy, a good one that listens (which where I live is very hard so don't give up). You may have to switch primaries. I went with an internist and interviewed her up front with "I think I have this but I'm willing to look at other stuff it you will help me". She has been on my side ever since. I can't stand her nurses but the dr is a good one.
    My point is, be your own advocate. If you don't feel right then chances are something isn't right. Don't let them blow you off. You are paying them, not the other way around. I am sorry you are on the dr rollercoaster but I sincerely hope you find a good dr soon that gets you off it and gives you the help you need.

  3. #3
    Join Date
    Jul 2005
    Thanked 0 Times in 0 Posts


    Hi Danielle, Tracy gave you great advice. She is right about a rheumatologist being the doctor who specializes in diseases such as lupus, fibromyalgia, Rhuematoid Arthritis, etc. One initial blood test any doctor can do that can indicate an autoimmune disease is an ANA. If your ANA is positive, they can do more specific tests to determine if you have lupus or RA or another disease. I hope this helps some. Take care and keep us updated on how you are doing.

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