I am pissed so I warn you- strong language ahead!

So I have been spending some time over at Live Journal- the Lupus community and have received some great advice and hearing their stories there makes me believe that I do in fact have Lupus. It is frightening that so many have said it has taken them 5, 7, 9 years to finally get the positive blood work that proved Lupus. Many said that the ANA test they took was negative for a long time.

A few of them told me that the doctors should be testing me for anti-RO, anti-SA, anti cardiolipin, c-reactive protein, anti-sm and anti-dsdna. None of these have been checked with me and I am wondering why! I am pregnant so there is a risk if I have Lupus being pregnant and the ANA is not the only thing they can check me for to be sure they can rule out Lupus.

I called the Mayo Clinic but they returned my call to say the appointment was not available at this time. Just fucking great!

My ANA is negative but the doctors here have not done those other tests. I’m pregnant and now I wonder if this will hurt my baby! If I have Lupus being pregnant what will it do to the child? I have to look into that- but I’m pissed the doctors are not taking the steps to do the other tests so they can rule it out completely!

I am dealing with local doctors who don’t seem to give a damn and I’m seven months pregnant. I am fucking pissed!! Wow I haven’t been this pissed since the first visit with that jackass rheumatologist.

Well so much for the happy mood I started with today!


About JustOrdinary

Hello my name is Rachel…around here I’m best known as Just Ordinary. I created this blog page to share pieces of my life with you, the reader, also to share my projects, and writings. This blog page I have created is a collection of realty and fiction. Not everything I write pertains to me or my life.

Posted on Monday, March 12, 2007, in health, Journal Pages, Lupus. Bookmark the permalink. 6 Comments.

  1. Wow, that is tough, my heart, my thoughts, and prayers are with you and your baby

  2. when i was on the early stage of my pregnancy my rheuma ordered an ANA profile (which I think is different from a simple ANA ) for me(which consist of a lot of ANTI (eg. ANTI RO you are talking about). There I was tested negative for everything so my rheuma and I were relieved. Another ANA profile for me as I approach the homestretch.
    When I gave birth, my baby was tested to have a heart to which her rheuma pedia attributes to a positive anti Ro when I was pregnant. But I told her I was negative. The next day, she came back and told me that the cardiologist made a mistake with the reading. And my baby is healthy.
    I am not sure if this just adds up to your stress but you and your baby are in my prayers. I just hope your doctors will be much considerate as my ob and rheuma. Lets hope for the best.

  3. correction to my comment i forgot to put a block after the heart. my baby was tested to have a heart block.

  4. Hope everything will b fine for you soon. 🙂 Try not to get so pissed off…it’s bad for the baby.

  5. Sorry to hear about the docs not taking you seriously. It took a long time for me to get a diagnosis of MS – which my brother has, too. They were labeling me with depression and later after I left the practice, I found out a not so nice mental diagnosis they never bothered sharing with me.

    I thought I might have lupus, too. One of the doctors who thought I was depressed thought I might have fibromyalgia. Beware, some doctors use it as a diagnosis for patients they believe to just have symptoms “all in their heads.” Of course, MS is in my head. 😉 Anyhow, I switched to my brother’s MS specialist even though I have to drive 2 hours to see him.

    Have you tried getting a referral to a maternal-fetal medicine specialist or perinatalogist? One that is affiliated with a medical university would be able to send you to specialists that would probably take you more seriously and be interested in evaluating your condition. I find they are generally and geniunely more compassionate and interested in your health and the baby’s health than regular OB?GYN’s – hence why they did a fellowship in maternal-fetal medicine. 🙂

    Good luck on finding out what is going on and hope all goes well with your baby.

  6. I feel very bad for you and what you’ve been going through. I was first told that I had a positive ANA in 1993. Since then I’ve been diagnosed with fibromyalgia and now I’m certain that I have lupus. I’ve had an abscessed tooth for a week and even though the root canal was “redone” and the extra canal was found, I’m still having facial pain on the one side. It is almost unbearable at times. I’ve been on antibiotics so the pain should be gone, but seems worse tonight. I’m going back to the dentist tomorrow. I’m a flight attendant and supposed to fly in a couple of days. Don’t know how I’m going to do it if I’m still in this much pain. I’m going to make an appt. with a Rheumatologist to get some blood work done and see how the Lupus diagnosis comes out. Will be interesting to see if I still have a positive ANA. I also have Hashimoto’s Thyroiditis (where my own immune system attacks and destroys my thyroid gland). I think it’s actually Lupus. All the best to you!

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