CAN SOMEONE TELL ME THE DIFFERENCE?

[postie]

What is the difference between undifferentiated connective tissue disease and lupus?  Aren't they almost alike in symptoms?

                                          CindyLou

[LZFreedom]

Hi CindyLou ~ maybe the connective tissue disease is an 'open' diagnosis, with maybe the absence of other conclusive evidence of lupus? Perhaps?
I'd think they're alike? However, lupus is an autoimmune disorder ~ in its worst cases the body does not recognize its own tissues, per se, and the body will attack its own connective tissues; not only the joints, but also the liver, kidney, and heart organs have the same types of tendons and ligamants that systemic lupus erythematosis will attack - again in its worst cases.
Don't know if that helps ~ I hope you find your answers! Best Wishes ~ Woshi.

[Manxie]

My primary doc ( Gp) just told me yesterday after many years of my thinking I hd something going on autoimmune that he thinks I hve undifferentiated connective tissue disorder. I had tests ten years ago for lupus which initially indicated I did have this and then didnt the second round of tests. I am awaiting specialist appt now to confirm diagnosis as I have two significantly positive antibodies (ana 640 speckled and asma 1;160) and many symptoms. In a way  I feel its good that doc has admitted this but only after ten frustrating years of vague answers and avoidance, and even then only becos I gt fed up with it all and challenged him. The difference as far as I understand it is that lupus has to meet four of 11 official criteria that are quite specific ( eg psychosis or epileptif fits for cns involvement, so my daily migraines wouldnt tick that box even though they re likley to be autoimmue related) . When the criteria for lupus or other autoimmune disorder is not met they label it undifferentiated connective tissue disorder. Hope this helps? Have to say that as long s I get answers and treatment I dont care how undifferentiated it it!! lol Im sure you feel the same??
                              Love Ali xx (Manxie)

[LZFreedom]

...thanks for adding the info Ali! My dx was also about 10 years ago, they said I needed 5-6 our of the 11 for positive dx of lupus... including cold sores, or sores in my gums, ever in my life... A few years ago, I had another ANA antibodies blood work up, and a rheumy and my gp got together and completely went over my medical history and new labs & said that they don't know how I was ever dx with systempic lupus!!! I cried like a baby! I didn't realize how much I'd really felt like it was a horrible sentence hanging over my head!! But I definitely have discoid lupus... the lovely lesions on my face are really hard to ignore! I've continued taking plaquenil to control the sun allergy, and it helps with the RA sx too. The doctors just don't always know ~ it's so hard to get well rounded treatment and accurate diagnosis, so many times. I wonder if lupus and fibromyalgia aren't becoming catch all's for doc's that don't know what else to do. Thanks for the undiff. clarification.lol. Best Wishes ~ Woshi.

[Joni686]

When I first saw a Rheumy back in Aug. of last year I had an ANA of 1:1280 (speckled) and many many symptoms of Lupus.  He told me that I probably had Lupus but he was going to call it a connective tissue disorder for now because at the time even with the sypmtoms and the high ANA I had come back negative for the Anti-SM and DSDNA tests which are also for Lupus.  He explained to me that if I came back positive for those two tests then I had Lupus and if I came back negative, because of my symptoms, I probably had lupus but he would not call it that yet because it was not certain and it was a heavy load for me to carry the rest of my life (insurance wise and everything).

Have you had your ANA checked or any other tests?  This is the first post I have seen of yours so I will look at your profile when I finish this post.

I think Woshi is right that Lupus and Fibro have become a "catch all" for times when doctors just don't know.  Sad, but we live in a time when they don't know much about autoimmune.  I pray all the time that new discoveries will be found.  One day maybe a person will be able to get injections that will make our immune systems stop attacking us.  Wouldn't that be wonderful !

Joni

[postie]

Hi Joni:

Ever since 1998 my ANA has been positive.  I have always had low white count.  But the Anti-DNA and the SM is always negative.  

                                 CindyLou

[PlateletGal]

I hope for all of you guys who may have lupus, that your rheumatologist has taken X-Rays of your hands and feet to look for swelling.

I agree though. I'm disgusted with many of these physicians who are too lazy to do the tests needed to make an accurate diagnosis. Some of the people posting on the fibro/CFS board say they have fibro, but they fall into the CFS category instead. Its a HUGE difference and the conditions are NOT the same.

Best,

PlateletGal

[OldFatChick]

I know what you mena about bad rheumatologists. Mine was going to wean me off prednisone so he told me to drop 1 mg every other day and eight days later to drop another until I was off the prednisone.  I did exactly as he said and when I went back to him 2 months later he asked how I was doing coming off the prednisone.  I told him I was fine and that I was down to 1 mg every other day and he freaked. He started yelling at me and told me that was too fast.  I told him I did just like he told me and he said he told me every eight WEEKS not every eight DAYS.  I told him no, that he had said every 8 days.  He then looks at my chart and says, "Well, I wrote down 8 but I didn't write down 8 what!"  This is the same doctor who, when I asked what would happen if I went out in the sun, told me to try it and find out.  I am now looking for a new rheumatologist.  I have an appointment next month with a guy at UTMB Galveston and my husband brought me the name of a guy his friend is seeing, so hopefully one of them will work out.