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Silentscream
03-11-2009, 05:27 PM
Just when we are getting use to the lupus diagnosis...
We are now being told it is undifferentiated connective tissue disease. The Dr. seems to be backtracking, which is fine but what a roller coaster ride. Have many of you started with UCTD and then jumped over to lupus?
It is true that there is a better chance the lupus with not have so much organ involvement if it starts this mild or am I being told what I want to despertly hear?
thanks again as always

sick n tired
03-11-2009, 09:44 PM
Hey,

Many of us have gone through the diagnosis, then undiagnoses( at least with Lupus) then something else...I have gone from Lupus, then Connective tissue disease, then Lupus. and Sjogrens... now I am being checked for other things to add to it...It can be frustrating but you are right. If she has no organ involvement it could be a "mild" problem meaning at least not life threatening but possible painful at times.

Faith
03-11-2009, 10:19 PM
Hi SNT & Silentscream,

I started out with mixed connective tissue in the beginning. It was put on my chart that way because once you have Lupus, you are unable to get medical insurance on my own through a private carrier. I was told verbally that I had Lupus.

When I visited another specialist, I was dx'd Lupus and it went on my chart. Consider it a blessing she is dx'd mixed connective tissue. Now would be the time to check into private medical and life insurance prior to a definitive diagnosis just to protect herself. I wish someone had told me this prior to the Lupus dx.

Without organ involvement, she will do better. Remember she will need regular check-ups and labs every three months to keep it under control.

Unfortunately, Lupus was the antagonist for me that opened my immune system to Fibro, Sjogrens, and many other multiple auto-immunes. Not everyone has multiple auto-immunes.

I would suggest she put on sunscreen when she in inside as well as outside as we typically react to the sun and flourescent lights. Check out Coolibar for clothing with high UVA/UVB.

I am keeping your daughter in my prayers and stay positive for her. She really needs you know more than ever to support her. I hope this has helped.

Take care,

Faith

cherokee993
03-11-2009, 10:33 PM
I also have UDCT but now they are looking at thyroid issues. It can be very confusing. But yes a definitive diagnosis of lupus is hard and really can be harmful in the insurance realm.