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Rheumatology Update

11/26/2012

Belle

So two weeks ago I made the dreaded trek to my Rheumatologist. I swear, those people always scare the hell out of me. I still don’t understand how they can insist I have disease when only two tests out of literally more than I can count are positive. And the two that have come back positive are not definitive diagnostic tools (for those with autoimmune issues – I have a positive ANA that during my flare was 1:640 and since recovering has stayed constant at 1:320, and a very slightly positive RA Factor of 24).

I have no joint problems. No skin problems other than the Telangiectasias and dry skin, both of which can be attributed to high hormones and/or sun damage. No fatigue  No suspect digestive problems other than constipation when I am injecting tons of hormones into my ass or accidentally eat an allergen. I have asthma that my asthma and allergy specialist says is 100% allergy induced. I have allergies to foods and things that grow and have fur but so do lots and lots and lots of normal healthy people. I really have no clinical problems other than infertility (PCOS) and chronic uveitis.

AND I have been told by numerous other doctors that 40% of uveitis patients never develop additional disease.

In my mind all of this means that I do not have lupus or scleroderma or mixed connective tissue disease or vascular disease or blah blah blah (the most recent disease tested for). Also, a pretty significant percentage of the population has a positive ANA and no disease, and chronic uveitis isn’t all that rare. So saying I have “disease” seems so…. overly doom and gloom.

Am I at a higher risk of developing a disease? Sure. Should I be monitored and make sure nothing changes. Sure!

So, dear doctors, how about we exercise a little positive spin and drop the “Your going to die soon” song and dance and lose the “lupus” title until I have enough markers to actually definitively diagnose me? K. Thanks. Bye.

Ok, end of that rant.

So I went to the rheumy two weeks ago since I’m pregnant and gave them the update. I told them about the hematoma and the doctor FREAKED OUT and insisted “It’s the LUPUS!” and ran a zillion new tests. She also thought it was VERY suspicious that my shins have always hurt and then said that perhaps I have Mixed Connective Tissue disease and ran a few tests for that.

“We’ll call you in about two weeks to discuss your results,” she said and then sent a quaking Belle on her way.

For two weeks I have obsessed again about my health, albeit not as badly as the pre-Prozac obsession. (Thank God for Prozac.) Two weeks of worry about tests coming back positive and forcing me to make terrible choices for my baby. Two weeks of pestering the Professor, “Does my skin look ok? Is this a rash? What about this bump in my throat?” Two weeks of stress that the Chicken totally did not need.

This morning the doctor finally called with my results – everything was negative. Nine vials of blood, two weeks of agony and stress and nothing is wrong. Again.

Don’t get me wrong, I’m so happy that my tests keep coming back negative, I just wish the doctors were not so intent on labeling something that is not label-able. I wish they exercised a little self control in the scary words they utter and used the tiniest bit of bed side manner as to keep me from worrying myself gray.

Anyways, so there is my latest Rheumy update. I go back in January for more poking and pestering (sooner if I lose this baby before then). Perhaps I’ll up my Prozac for that visit….

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7 Comments

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  1. November 26, 2012

    You’re right that a lot of people have these same things – positive RA and ANA, asthma and allergies – without having Lupus or some other horrible disease. I’m one of them. It’s been about 20 years since I first had positive RA and ANA results and was told, “Um, it might be Lupus.” Over the years I’ve had numerous tests run and been to a couple of different rheumatologists, but they never find anything. They’re never able to make a diagnosis. They had me living in fear for quite a while, but when nothing develops after 20 years, you just get on with your life and think that maybe they’re full of shit.

    I’m glad that your results came back normal and I hope they continue to do so!

    • November 26, 2012

      Gah! I’m so glad to hear this! Seriously, the constant ups and downs that I might be sick or be getting sick or one day become sick just drives me mad. Knowing that other people have been in similar situations and continue to live happy, healthy lives gives me lots of hope! Would you mind sharing what brought you to the rheumatologist in the first place?

  2. November 26, 2012

    Oh Belle! I’m so sorry that you are getting this added and unneeded stress. I’m a super-worrier too, and I think I would lose my mind in that kind of situation. I’m very glad that you and chicken are fine, and I hope you don’t have any more scary doctor visits–I think you’ve had enough scary for one pregnancy. Time for some uneventful baby growing.

  3. November 26, 2012

    Wow they seem so hell bent on labeling you with something. It’s almost as if they are disappointed when your tests come back saying that you have nothing, I think you have rheumatoloigist induced stress. That is all. Tell them to leave you alone and go diagnose someone else for a while.

  4. jak #
    November 26, 2012

    good gawd. don’t you love it how specialists freak out because they’ve got their heads so far buried in their specialist books (i was going to say up their specialist butts) that they can’t see normal for what normal is? i was in the ER when i was a teenager for a badly broken arm and the attending doc told me i have a heart murmur and that athletes “frequently” drop dead from this condition and that i need to see a cardiologist (like him) asap, before i drop dead. especially since i had asthma, he was double certain i’d be extra dead. 15+ years and 2 half marathons later, i’m not dead. nothing short of a miracle.

    time to focus on chicken and feeling good:) hope you dont have to see your rhdoc for a very, very, long time!!

  5. November 26, 2012

    poor thing. I have never had that experience but when a dr. tells you there’s something wrong your usual response as a n american woman is to panic, more so when you’re pregnant with a baby you’ve been trying to conceive for a long time.

    I am glad your tests keep going up negative and hope they stay that way!

  6. Arbrefleur #
    November 27, 2012

    I have so been there! I have a very special, undiagnosed immune something problem. The docs have no earthy idea what it is. I’ve been to a ton of docs. All their bajillions of agonizing stress-inducing tests are neg. It’s such a mystery that a few years ago, I just decided it doesn’t exist, went to a Naturopath and never looked back and I’m doing great! And yes, the specialists are soooooo specialized here in the States that they literally can’t see the forest for the trees 90% of the time. And the Rhuemies are the worst! I say, ditch your rhuemy. Maybe find someone who’s a leeeeetle less The Sky Is Falling. Or…do you have a naturopath already? Is he/she able to give you any comfort? Mine did. She rocks. If you’re open to that sort of thing, I highly recommend it!

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