The Good News and the Bad News

 

Well, I saw my rheumatologist today. He said my blood work indicates not systemic lupus, but mixed connective tissue disease. He was quite cheery because he said it does not attack the organs like systemic lupus, so this is great news and I should be relieved. But me being me (and most of you being you) I researched it online.  

From MedicineNet:

“Mixed connective tissue disease, as first described in 1972, is “classically” considered as an “overlap” of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name “rhupus”).”

Well woo hoo! Woo hoo!

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7 Responses to “The Good News and the Bad News”

  1. misswaxie Says:

    Annnywaaay. I just wanted to stop by and say that i’m impressed that you’re so active with both your profession and your passion for art, how wonderful! I’m working on a comic about my experience with life long autoimmune illness and i’d love for you to check it out – http://acomiclifeindeed.wordpress.com – but if not, that’s cool too.

    Hope you’re feeling well!

    Hi, I found your site while searching out other wordpress users with MCTD / UCTD.

    Obviously, I’m no doctor (i just play one in my head 🙂 ), but often times doctors label something MCTD when its really undifferentiated connective tissue disease (UCTD) – which is when there’s more of an issue of having a bunch of rhuem. disease markers but nothing concreately “lupus” or “scleroderma” or “RA” or whatever. *THIS* is actually good news(ish) since it has a better prognosis/outlook, rather than MCTD which actually means you have positively have indicators of lupus, scleroderma, and polymyositis.

    (of course, you don’t know me, nor do you have to take my medical advice at face value. I’m just passing along info!)

    Thanks misswaxi. My husband told me he’s quite sure the doctor said undifferentiated, and when i looked it up it seemed to fit me more. The doctor has also ordered more bloodwork, so i will wait for that to get back then call and ask him for sure. I appreciate your input and will check out your site shortly.

    Warmly,
    Psychscribe

  2. Mary Says:

    Go to knowthecause.com and rush to a Naturopath MD and I’m certain you will find the cause of your symptoms. Autoimmune is anathema to life, and not a possibility. So you must do the research yourself as western doctors like trained lab rats can only come to the prescribed conclusion. Like drug dealers they will make you their patient for life with prescriptions for painkillers and antiinflammatory immune suppressing drugs for the balance of your life. WRONG! DO NOT ACCEPT WHAT THEY OFFER.
    I watched my mother suffer with her Scleroderma from my birth when she was 21, until her death at 46. My mom died when I was 25, only weeks after I gave birth to my lovely daughter 21 years ago. I recognize that the symptoms my daughter has had for the past 5 years are the same that grandma had in her mid twenties. My daughter’s lab test show slightly elevated antibodies.
    She has chosen not to follow the Rheumatologists advice. Instead my daughter has eliminated starches, sugar, grains, and yeast from her diet. She is taking NYSTATIN (1 gram) before each meal, 1 Tb of extra virgin coconut oil 3x daily. The reduction of her C.R.E.S.T symptoms have reduced dramatically, mostly the raynaud’s and esophegeal symptoms and the telangectasias on her feet have nearly vanished. And although she did not have sclerodactyly, none of her rings fit over her joints and her skin was taught.
    Best wishes to you on your journey to health.

    THANK you Mary for taking the time to write all this for me. I will definitely look into it.
    Blessings to you and your daughter,
    Psychscribe

  3. viv66 Says:

    Well, at least you know it is being taken seriously and has a name. Know thine enemy, I say.
    I will think of you in my prayers.

    thx, viv – actually i asked my husband and he doesn’t recall the doctor saying “mixed” connective tissue disease ( which I have no symptoms of)- when I looked it up, it seems like I would have “undifferentiated” connective tissue disease, far more benign…i’m not going to call and ask him because it won’t change anything and he was optimistic and i feel really good…

  4. San Says:

    It never gets easier we just get stronger and then some. Hang in there and make a spot at your coffee table in August if not sooner, miss you lots!!!

    Love and hugs

    Thx sweetie, i’m so disappointed things didn’t work out as planned and I didn’t get to meet you……i took the good-bye to my
    uncle really hard, and still am actually…can you email me where you’ve decided you will live????

  5. vanessaleighsblog Says:

    Hey Psych:

    I guess knowing a bit more is a blessing and curse of sorts, yes? I appreciate that I do not struggle with chronic pain and illness, but my beloved does with fibromyalgia and Chronic fatigue, and it really discourages her at times.

    Knowledge is power, so keep yourself informed!!!!

    Sending big hugs to you and please keep me posted!!!! V.

    Thanks V, you are a dear.

  6. lupusranting Says:

    What’s in a name? Regardless of what the “official” name is, I’m glad you’re feeling well! Will continue to keep you in my prayers 🙂

    Thanks my dear, and same to you.

  7. Goony Says:

    Hey there,

    I came across your page while searching for ANY info on undifferentiated connective tissue disease. Seems we were diagnosed about the same time. I was surprised to learn there are no books on this disease and so little info on the net. Kinda scarry for me. I’m a research junkie and can’t stand not understanding what’s going on with me. My Rheumatologist put me on plaquanil which seemed to be helping until this morning. The change in weather must have something to do with it? Anyways, just glad to see someone else out there that I can relate too.

    Hi Goony. Thanks for writing. You’re right. There isn’t much out there. I was also recently put on plaquani since I wrote this post and saw the doctor and it is helping. I had full blown lupus for 4 years, now the blood tests show the undifferentiated, which is actually a lot less scary and i feel a whole lot better. Pls do stay in touch. I do think how I feel is affected by the weather. Hang in there. I know its scary 😦

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