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Thread: Just awaitin'

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    Default Just awaitin'

    I am a 25 year old woman. I went to an internist about a month ago because I wasn't feeling well in general. Blood work came back with an ANA of 1:1200. I didn't think much of it because I already have an autoimmune disease (Crohn's). But I do have a ton of joint pain, so I went to see a Rheumatologist anyhow. And my ANA has never been positive before in the 7 years I've been diagnosed with Crohn's.

    Three weeks later, I've found myself waiting the results of 14 vials worth of blood tests to return to determine if I have lupus. They tell me it will take a month to get results, so in the meantime I'm researching. I have many potential lupus symptoms, but I'm trying to figure out if they match up on a more specific level. If any of you would be so kind, would you share to the extent that these symptoms do / don't sound like your experience with lupus?

    1. Joint pain -- it varies between sharp and dull and hits just about every joint in my body. My fingers ache all the time. My right wrist hurts to badly that I can't write, and some days I have difficulty walking. (Rheumatoid factor was negative)

    2. Muscle aches -- aside from the joints, I usually have a dull aching in my jaw and leg muscles. Massaging does not help except as kind of temporary distraction.

    3. Shortness of breath -- it comes and goes, and can happen when I'm exercising or just sitting in bed. I had my lungs x-rayed about 2 years ago. At a loss, my GP gave me an albueterol inhaler for allergy-induced asthma, but it doesn't help.

    4. High CRP levels that do not change when my Crohn's is in remission. This always bothers my GI's, but they don't know what to do about it.

    5. Itching -- not consistently, but sometimes, I wake up in the middle of the night because my stomach and arms itch like crazy. There is never anything visible like a rash.

    6. Ankles, knees, and calves swelling -- it's usually toward the end of the day. They've tested my kidney function twice and say it's normal.

    7. Constant fatigue -- just can't get enough rest no matter what...in part because of pain, but frequently feel exhausted like I would give a million bucks just to lay down.

    I have many other symptoms, but most of them can at least abstractly be attributed to Crohn's. Don't worry, I'm not asking anyone to diagnose me. Just trying to see if the things I'm experiencing are way off the mark.

    Many thanks,

    Emily

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    Hi Emily,
    Welcome to the site. My name is Kathy and I have Lupus among several other auto-immune problems. You seem to have a high ANA titer. I have a lot of the symptoms that you have. What you need to do is list all of your symptoms and take them to the doctor with you and you need to see a Rheumatologist. It is really hard to get diagnosed with Lupus as they do not only rely on the ANA. They have a list of 11 criteria that they use and you have to have at least 4 of them. I am wondering ifyou are sun sensitive as a lot of us are very sun sensitive and sensitive to floursecent lighting. Lupus is really hard to diagnose, because they call it the great immitator of a lot of illnesses and they have to rule it in or out. There will be others that come in here that are very knowledgeable. I am fairly new to the site, but not to Lupus. I will be 50 in December and have had Lupus, the doctor believes since the age of 5, but did not get diangosed until I was 36 years old due to lousy doctors that would not listen to me. It sounds like the doctor is doing the right thing with ordering all of the tests on you. I hope that you get some answers and very soon. Keep posting ok. Like I said there will be others that come in here with more knowledge.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Rosebud;

    Yes, many of your symptoms can be attributed to lupus, however, as Kathy mentioned, they could also be attributed to other auto-immune disorders, such a Fibromyalgia, polymyositis, to name a couple.
    Here are some of the symptoms that you listed that could be due to Lupus: Joint pain (inflammation due to Lupus), shortness of breath (pulmonary involvement due to Lupus), Muscle pain (myositis due to Lupus), Constant fatigue (anemia, renal insufficiency, hypothyroidism, ongoing disease activity, depression, deconditioning, poor sleeping habits -all can be due to Lupus), High CRP (C-Reactive Protein) - A high result serves as a general indication of acute inflammation (can be due to Lupus).
    In order to be diagnosed with Lupus, you will have to meet four of the eleven criteria (the criteria are located in Newly Diagnosed). According to the symptoms you've mentioned, you may meet the criteria. However, it is also possible that your symptoms are due to mixed-connective tissue disease (a term used by some doctors to describe a disorder characterized by features of systemic lupus erythematosus, systemic sclerosis, and polymyositis) or undifferientiated connective tissue disease ( a condition which affects body organs and muscles in a number of way, yet has not developed to the stage where physicians can easily pinpoint the specific disease), or several overlapping auto-immune diseases. Due to all of these possibilities, Lupus is a very difficult disease to diagnose and the process may take several months or even a year.
    You are doing the right thing by keeping a record of your symptoms, also keep a journal of when the symptoms appear, what you were doing/eating etc. when symptoms change, and how the symptoms make you feel, what activities make you feel better or worse, etc. This will help immensely when your doctors are trying to make a final diagnosis.
    In the meantime, you can always come to us and we will be more than willing to help you as much as we can.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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