Undifferentiated connective tissue disease

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primalSCREAM

Posted Tuesday, June 16, 2009 2:23 PM

Group: Forum Members
Last Login: Today @ 3:55 PM
Posts: 118, Visits: 73

Ok...today I was diagnosed as having undifferentiated connective disease....I don't know who to talk to on the foundation forums...I'm really at my wits end at this point. For 6 yrs I was told I had Fibromyalgia and chronic fatigue, no I apparently don't have these. My ANA is positive and a new test called JO-1 antibody just came up positive. I've been suffering with Iritis, and have recently had 3 episodes of severe joint & muscle pain that lasted 24hrs then went away.

Does anyone out there have this?

thanks...... Crazy

Diagnosed with Mixed Connective Tissue Disease Sept '09....Started prednisone therapy Nov 12 '09

If God has a plan for me I hope He lets me in on it........

Post #4209432

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Keli in Florida

Posted Thursday, July 16, 2009 12:56 AM

Group: Forum Members
Last Login: Wednesday, November 11, 2009 3:06 AM
Posts: 480, Visits: 234

Sorry wish I could help you! I think I may have a friend in Canada though that has been told she may have this. I'm not 100% sure though.

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Shelley G

Posted Friday, July 17, 2009 12:14 PM

Group: Forum Members
Last Login: Sunday, October 18, 2009 5:57 PM
Posts: 5, Visits: 31

Hi Kelli,

I'm also diagnosed with undifferentiated connective tissue disease. I was first dx'ed 4 or 5 years ago, and was really confused about it too.

I've since found out that UCTD is just how rheumatologists describe people who don't show quite enough symptoms or positive lab results to be diagnosed with lupus or RA, but have enough going on that it's clearly a mild version of some type of autoimmune connective tissue disease. In my case, I have positive ANA, occasionally wonky white blood cell counts, and lots of joint pain and stiffness.

My rheumy told me that about 50% of people like us go on to develop lupus or RA and that 50% of us will stay the same or even get better. She has me on 400 mg of Plaquinel once a day, and then I also get acupuncture once a week, which seems to help with the inflammation in my hands.

The hardest part for me is being in diagnostic limbo. When I tell people about my health issues, I tend to just say "lupus-like" disease or "autoimmune" disease, because no one really gets (or wants to get) the whole UCTD thing. By the time I get "undifferentiated" out of my mouth, their eyes start glazing over. The one good thing about having UCTD is that insurance companies are less likely to penalize you for having it. Not sure about RA, but I've heard patients with lupus can have trouble getting insurance and also are asked to pay more for it.

Hope you start feeling better soon! Smile

-Shelley

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Keli in Florida

Posted Friday, July 17, 2009 9:51 PM

Group: Forum Members
Last Login: Wednesday, November 11, 2009 3:06 AM
Posts: 480, Visits: 234

Hi Michelle,
I know what you mean, I go thru that with PA. Most people have no idea what it is. Even some doctors and nurses. If you ever just want to vent feel free to just message me.

Post #4217618

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Jen B

Posted Thursday, October 22, 2009 9:32 PM

Group: Forum Members
Last Login: Thursday, October 22, 2009 9:32 PM
Posts: 5, Visits: 6

I understand what you're going through. I started having random symptoms and joint pain when I was 18. First they said it was "nursing school disease," then overweight, then depression. At one point, I was so bad I couldn't work. At that time the rheumy diagnosed me with lupus, then he took it back and called it UCTD because my labs were convincing enough. It really stunk, as I was in my 20s, trying to start a career, and looking for "the one." How do you tell potential husbands that you have all these weird symptoms and they don't know what it is? It was a major bump for me.

Eventually, I went to see a new rheumy, who diagnosed me with RA. It was probably easier to diagnose me once my grandmother was diagnosed with RA. I didn't have classic initial symptoms, and I am still seronegative. After 14 years of dealing with this, I have no doubt that I have RA -- it is pretty obvious by now.

While being in "diagnosis limbo" was pure hell, the advantage of being diagnosed with UCTD is that I was started on all the right meds. I started feeling better, and it delayed joint destruction for a few more years. And despite my initial dating woes, I am now happily married to an eternal optimist that is ready to take on anything with me.

Post #4248831

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