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Thread: newbie with questions

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    Default newbie with questions

    I have not been diagnosed, but lupus is one of several possible dx. my doctors are looking at.

    I do not appear to have "enough" symptoms in any category for a definite dx., but wanted some input from others....

    I have had numbness/tingling sensations (sometimes very mild, sometime quite severe-it varies) throughout my entire body for several years, and have been steadily losing my hair (just on my head) . I also have a slightly elevated ANA in my blood work.

    Do these seem like likely lupus symptoms to anyone?

    Thanks!

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    Sounds like symptoms to me. Hope you find out what is going on soon!

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    Unfortunately, lupus is one of those diseases that can look like a hundred other different diseases - that's why doctors call it the great imitator. Because the diagnosis can be so complex, many doctors are reluctant to label a patient as having lupus until the diagnosis is established through a combination of symptoms and abnormal lab results. Although most people with lupus have a positive ANA, a positive result in and of itself does not mean you have lupus - many people have a positive ANA with no underlying illness. Positive ANA tests are also common in many other illnesses - including other autoimmune diseases, thyroid disease, viral illnesses like mono, and acute bacterial infections. The majority of people with a positive ANA don't have lupus. It can be confusing because ANA is often called a lupus screening test, but a positive result only means lupus is a possible diagnosis, while a negative result means lupus is an unlikely diagnosis. And while numbness and tingling and hair loss are very common in lupus, they aren't specific to lupus - they can be caused by other medical conditions too. As frustrating as it is, sometimes doctors have to wait for more symptoms to develop, or for abnormal lab results, before they can definitely diagnose lupus.

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    Thanks for your replies.....yes I've been going through the multitude of tests necessary, but nobody has been able to narrow it down yet. Its very frustrating, and a little scary- I don't want an inaccurate dx, but while I'm "waiting for more symptoms", what if whatever I have is getting worse?

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    I know this is probably not what you want to hear, but for many of us, it took the worsening of symptoms for our doctors to finally be able to diagnose us with Lupus. There are many reasons why Lupus is so difficult to diagnose and Marycain has gone over a lot of them with you. Lupus is known as the great imitator and unfortunately, it changes even within us. The symptoms that we have this month may disappear only to be replaced with a whole new set of symptoms next month. Sometimes, it takes time for symptoms to develop and, until they do, doctors are reluctant to make a definative diagnosis. For some, symptoms develop quickly and are pretty straighforward, however, for most, symptoms develop slowly and over time and are frustratingly confusing to both us and our doctors.
    Also, there is no one test that will give a definate Lupus diagnosis and, as Marycain pointed out, many indicators that some believe are true tests of Lupus are not and they can be signs of other illnesses. Even healthy people have been known to have elevated ANA.
    Some doctors, if they truly suspect Lupus but have not made a diagnosis, will start their patients on treatments in order to relieve some of the symptoms. This is up to you and your doctor if you want to address this issue in the hopes of not having to wait for your symptons to become worse. Please keep us advised
    Peace and Blessings
    Saysusie

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    evilumbra, I am so sorry to hear that you're having a tough time. Saysuise is exactly right, lupus is hard to diagnose and many times to diagnose it things have to get substantially worse before doctors will take note. My reccomendations would be to find a good doctor that you trust and feel comfortable voicing all of your concerns to. My doctor is fabulous and really goes the extra mile for me. Also I keep a symtom journal because my lupus is one way one month and completely different the next. Sometimes I can see trends, but its always good to have my journal at my appointments. Welcome to the site...all of us are here for you! Good Luck & keep us posted! You are in my thoughts and prayers!

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